I spent the last 4 days being fairly comotose. I forced myself through a big (for me) shopping expedition on Sunday, and I could hardly think (or move) on Monday. I was trying to read some abstracts on babesia, and couldn't even remember the words long enough to look them up online.

And then, this afternoon, voila. Le brain returns (not fully, but waay better). I feel good, I'm functioning, and I have plans for being productive tomorrow.

I've read about cognitive dysfunction with Lyme, but I don't recall anything about this short, cyclical nature of function/no function. Except with the bi-polar stuff, but I don't feel manic, just...more normal.

The no-function period is always linked to fatigue, insomnia, and anxiety.

I have several theories, this being my functional stage, but I'd love to hear from someone who actually knows about this stuff (DM, you there?)

I haven't made any med, dietary, or other changes over the last month.

Does anyone else experience this wide swing from almost-normal to total brain-fry over days and hours, with no apparent trigger?
 

While it's too early in this experiment to say, "This is definite," I've been going through something similar with bartonella. Three weeks ago, I started rifampin and ketek. There was an abrupt improvement in the cycles you describe here. Suddenly, I could sleep through the night without waking up, a bunch of petty little obsessions disappeared, my reading comprehension and memory improved, I started scrubbing my apartment, and my monthly cycle went back to normal after five years. I know it's hard to remember the days when one antibiotic could have this effect (for normal people, it happens all the time), but it's true.

Also, whenever I'm feeling so much better that I forget to take the rifampin on schedule and the last dose wears off, some mysterious symptoms (anxiety, fatigue, insomnia, mild sweating) immediately come back.

One more thing happened that might be useful to you: on week 2, I went through a massive herx that was unlike anything I'd had with other antibiotics, including rocephin and minocycline. First, my hair started to fall out and my short-term memory went. Usually, at this point in the cycle, I get the anxiety, insomnia, and fever. Instead, my whole throat swelled up and was heavy and painful to touch. I started to sleep constantly, and was exhausted throughout the day. Whether this was a herx or relapse, it suggests that these bugs literally inflame the area at the base of your head, and around your thyroid. The results could very well be the symptoms you list here.

Incidentally, if you happen to know how long it takes rifampin to kill bart, I'd be curious to learn. Many of the people who have taken it have disappeared from Lymenet.
 

Some days I think I am nearly cured.

Then out of the blue, my brain will just be, well, missing.

Yesterday I hardly made it through work, could barely stay awake at my desk. Had to keep getting up and walking around to shake myself awake.

Took daughter to soccer, then figgered I could run an errand while she practiced.

Off to drive to KMart. Driving down the road, not only could I not remember how to get where I was going, I could not even remember where I intended to go.

I was driving very slowly and cars behind me were beeping their horns in annoyance.

My mind was just blank.

This happened last week too on a freeway interchange, causing me to pull off on the shoulder of the road.

It is frightening.

The forgetting things is frightening too.

Even though some physical things (the headaches) are improving, some of the cognitive stuff does not seem to be. Maybe it just takes a lot longer.

More research! More studies! More money for Dr. Fallon, please.

Hang in there.

Michelle

 

Cigi
 

I especially went comotose after doing a round of Doxy.Wow,I felt like a total stranger in my body.This after doing other abx.for over a year.Never underestimate the power of Doxy.

I had been on everything,orals,IV,back to some orals and then I went back to this Doxy,the drug I started way back when.It was truly scarey ,to say the least.

It is very frustrating,you have your feeling on top of the world and then,well,I feel like a kid sitting at the table and having my meat cut.Uhhhhhh!

Once I got thru the doxy scare,I came out feeling pretty wasted.Somedays I try those word jumbles.One day I sit and stare,other days I put those words together in record flash time.Also,I like most variety of music,it seems the kind I use to turn off,now I listen in intrigue.The brain is amazing,mine has been unlocked in certain ways and frozen in others.

Yesterday,I had a pack of teen boys cooking in the kitchen.It was busy and I was lucky to have the brain capable,the day before I would have sent them running in tears.Go figure.

I recently started taking Provigil.I take it in the morning,it has helped lift the morning fog and seems to help me gather mental brain steam,for the days I really need it.I mean I'm a whole lot better from the beginning but those few loose ends,they really bug me.

Hope you feel better,Have any new tales??
 

I have no answers but I know alot of neuros are in the same boat. Sure hard to plan a day, much less a life!

Any nobody sees um but us and a few Dr's.

Heres some links for you minoucat.

Psychiatric Lyme
Fallon & Tager Report
Duramater NeuroPsych Info Kids&Adults
Neurologic Lyme
Neurologic Lyme

Dirty Truth
Sporadic Schizophrenia
Psychiatric Manifestations
Columbia Lyme
Schizophrenia & Lyme Disease
Sunra links

Thats what enough spirochetes can cause.

[This message has been edited by treepatrol (edited 17 August 2005).]
 

Yes, this is a large issue for me as well. Some days I am doing pretty well...seeing the old me again, and other days...well, ya know.

It IS the most frustrating thing!

I am particularly out of it when I am tired. And not just at the end of a long day- but falling asleep tired in the middle of a sentence in the middle of the day.

I do hope that this begins to resolve like most of the other symptoms have.

It is really difficult to pretend to be normal around those who aren't aware of my unique health problems.

Melanie

Liz28, thank you so much for the info on how you fared on bart tx. I don't have a lot of overt bart sx and we've held off treating it in me, but I think I'll ask to do the tx. The hubby definitely had bart. He did the levquin and something else tx for 2 months. Dunno if that got it or not - he certainly saw a big improvement, but he's stalled out again seemingly. So hard to figure out -- he's still on babs tx, and those meds are hard on him.

Islandgirl, you hit the nail on the head for me -- I'm afeared of what I'll find out if I do a full workup and testing. Denial is not just a state of mind, it's a life strategy...

Interesting that the fatigue, insomnia, anxiety, and brainfog are part of the standard package. I wonder if that means a particular area of the brain is affected, or particular neurotransmitters (acetylcholine?), or what.

Major, major monsters.
 

Interesting that you've never treated bart, or whatever other bugs out there are bart-like. Can it possibly be transmitted to family members, as Lyme is?

If you do try rifampin, be forwarned, the herx really drags on.

Also, on days when I feel terrible but must have some memory function, two things do help: Thera-flu non-drowsy tablets (will keep you awake, though), and handfuls of phosphatidylcholine.

[This message has been edited by liz28 (edited 17 August 2005).]
 

As far as meds go, low dose psychostimulants can sometimes improve cognition and overall fatigue. Cytokine modulating agents are currently under investigation.

There are a number of adaptation and compensation techniques that people with mild cognitive impairments can employ.

* do only one task at a time

* keep written records of appointments and other important events

* schedule appointments mid-day when fatigue is at its lowest levels

* use digital clocks/watches that include dates

* use pillboxes with built in alarms

* use nightlights as disorientation is worse in the dark

* keep all furniture, personal belongings, and things used daily in the same place. consistency aids location memory.

* avoid over-stimulating environments which can exacerbate symptoms (e.g., malls)

* the more structure/organization/external support for activities, daily schedule, common tasks, the better

If you do these things consistently (not just when having a bad day) the peaks and valleys of cognitive problems won't be as dramatic.
 

thanks,
cigi
 

LECITHINE capsules a few a day
 

Dr J B in a presentation from 4/04 said 15-30 days sometimes 60.

I believe phosphotidylcholine and lecithin are the same thing. Eggs (the yolk) are high in lecithin.
 

Ya'll sound like me...too bad.

I have found that an occasional flush of B12 really helps me.

But...seriously. I just added 20mg of Benicar to my regimen a day. WOW!!!!!!!!!

Herx...BUT...VERY clear headed. Less depression also.

Trout
 

So far my families all-time favorite story of stupidity is...

One Sunday afternoon I lay stuck in bed alternately dozing, reading as I could, and watching rotten TV. I needed to give the kids some direction about dinner. (They both have lyme and are not supposed to be eating junk) The thought of walking downstairs to talk to them was really overwhelming. I used my cell phone to call them on our home line. I was feeling so pleased to have thought to use the phone. When my son answered, I said, "Can I talk to Mom?"

Listen, I really hope that you are feeling better soon.