I stopped into work yesterday. I haven't worked in7 wks? I think that's the lastest count.

I saw all these people in the waiting room . They recognized me and welcomed me warmly by name. I had no idea who they were at first,
(thinking "wow, a lot of new Patients")

Litltle by little, certain faces of voices became familiar.

I stayed for an hour and co-treated with another therapist. I understood my work, and my hands and brain was cooperative. I remebered the patient's name and that she was a long term patient, but that was all I could remember. I used my dianostics skills and the word of the supervising therapist as confirmation for treatment.

I woke early this am with nightmares, and very upset. I have remembered the other patients in the waiting room today. I have treated them, one of them multiple times. I remembered that today. Yesterday I gave them blank stares.

I'm feeling very sad and overwelmed today. Knowledge of how often this same kind of scenario has happened is becoming very clear to me.

I feel like I should issue a bulk apology to everyone I've ever met and forgotten. But that would be just about everyone.....

My memory is really bad too. I'm going to schedule a neuro psychiatric testing to theck for either: neuro lyme brain or early onset Alzheimer's disease.

My sister-n-law died at age 40, yes 40, after having AD 8-14 yrs. I know all the symptoms too well.

Have you had any memory testing done.

I do have neurolyme..and encephalitis.

Before I stopped working, I used to ask the receptionist, and other therapists who my patients were. I'd also step into the doorway of the waiting room and just say a name and wait for a response.

I did have a couple of neuro/memory tests done with my initial LLMD exam.

I think it's admirable that you admit this problem to yourself & others. I've seen quite a few doctors who can't place who the heck I am or what they've been doing to or for me during any office visit.

Some of them *don't* have lyme or memory problems... which leads me to beleive they don't care much.

One very busy doctor that I see has a habit of looking through the patient's chart quickly to jog her memory before going in the room. This is unusual, most I've seen just ad-lib. I can't tell you how much I appreciate that. I'm sure all of her patients do.

I think some people would be relieved to know that you've been sick lately and having a problem remembering everything that's been done. Obviously you care, and that is very valuable to a patient or client.

It might help if you take extra time and write a list of important things on the side of each chart.

I have a lot of short term memory loss too but the comprehension is there. I didn't start to get any short term memory capability back till rocephin/flagyl. I've got some back after that but still have a ways to go.

lists, lists, lists....

best of luck and thanks for caring so much about your job.

check with your llmd...

Teri- Sounds like you need to talk with you supevisor, and explain your delemia. Since Lyme is a disability, you emplyer should be willing to help you and// or support you to make necessary acommidations to help you have better memory jogs. Maybe even have a friend or peer help you to write out processes for things you know really well, but are getting stuck loosing in your mind
.
But also don't forget the rest you need to really heal. I know part time work is a rotten option,, but I'm deciding it's beter than a no work option which is the only one i have right now.
Good luck , and keep talking!

At any rate, after treatment and a bit of healing time, I got a fair amount back. But like anyone with impaired memory, you need to take advantage of the two things that make memory work: repetition and organization. Set up systems of organization: car keys in the same place at home and work, same order of checking things when you come in the office, etc. Repetition of information is self explanatory - get creative. And then there is "externalizing your brain" as in keeping lists or having a small notebook with you where you write things down and re-check frequently (better b/c you don't forget where you left your list - its in your "external brain!").

If you are still in treatment, the memory stuff will likely vary over time, but once you are done, SLOWLY it should improve.

The only thing that's helped my short term memory was rocephin & flagyl or tini, and I didn't get rocephin for long enough (28 days). It's a little better but not much. I did start to recognise people a little faster too. Flagyl is very hard to take I think if the bbb is comprimized. I wasn't able to tolerate it well at all until after 2 weeks of rocephin- then it was sort of a breeze. I can take mega doses now. Rocephin has very good brain penetration.

Personally I've found I relapse on stuff that doesn't cross the bbb. Not everyone does- but it's certainly worth considering.

Since my Lyme had been with me for most of my life, I developed many memory tricks as well as the "paper brain" . Right now I have a designated spiral bound notebook to record all of my coespondances abt treatment and healing.

When my letter discrimination skills get bad, I do word searches from the newspaper. I have developed exercises to retrain my motor skils and balance and many other things over the years. My Lyme dx only came when the tricks started to fail.

But the newest piece is the realization that I have been forgetting. I didn't used to know some of it. I just didn't remember that I forgot. So I hoping that's a sign that I'm healing.

Dura I think it's so cool that you research memory. I was suppose to take a neuroanatomy class this past summer, but now it's on hold until..... I can understand the word again, and rememeber.

I too didn't know my co-workers names. My assistant kept joking and telling me it was time for my "meds" because I would ask the strangest questions.

I didn't know how to use computer. I didn't know how to do my job. I had been in a fairly high profile position for over 10 years - yet I just sat there and nothing made sense. My managers put me in a training class with beginners - for a "refresher course". I was secretly grateful for that.

Anyway, I couldn't keep up as I couldn't understand the words coming out of the instructor's mouth. When it came to medical terminology, I was absolutely lost on the meaning of simple terms when they were part of my daily vocabularly for over 20 years.

I stopped working then, came home, and slept for a month. I was too tired to even pick up the phone most of the time to call for take-out.

My doctor too wondered if it was early onset AD. I wasn't diagnosed with lyme for another five months after that. By then, I'd been sick for a year and a half (and been to a *lot* of specialists, you all know that story).

My neurocog tests were not that bad until I was stressed in any way. Then, I could not learn, nor remember anything.

My brain MRI shows lesions. I too had the encephelitis.

Long story. As far as memory goes, I would write stuff down, but it would never occur to me to go back and read it. I would write in books and put stickies or make filing systems that would later make no sense. I'd start the same book 10 times because I didn't remember reading it the night before.

I'd miss appointments, forget to meet people, lose money, my purse, driver's license...I just constantly would lose things. I was never like that before.

What I have found that works for me, is heaps of rest, avoiding *all* stressful situations. I swear stress is the worst thing of all. Not overdoing it, and just not putting any pressure on myself. Luckily, my LTD was allowed and so I have that luxury of being able to sleep when I need to.

I find that interesting what ll2a said about Bartonella since my titres go up and down for Bart. They cycle.

Anyway, you aren't alone. It's great if you can find a network of people in your area who have lyme. That's been a lifesaver for me. Even if I'm too sick to go out, we yak on the phone and can laugh at this stuff when the rest of the world just doesn't understand.

I can't imagine anything worse than a disease that robs you of your functioning brain (and then, to have to fight for medical care, and disability and so forth on top of being desperately ill!)

Wow, a little ranty!

Good luck to you. I just wanted to say that I've been there and you aren't alone with these bizarre experiences.

Sleepy!

So, anyway, are you better?

The funny thing for me is that I'm not teribly tired. I get worn out and confused from time to time, and my balance and coordination skips around, but I'm so surprised at how little sleep I'm getting.

Today was a very good day. I hoping that if tomorrow is good too, I can go to the gym for a bit. I hav't been there in 3 weeks due to having my port installed 2 weeks ago and getting my official LLMD dx a few days before that.

My LLMD stressed over and over resting and not overdoing, but quite frankly, I'm getting bored with the lack of doing, and would rather overdo slightly to be nice and exhausted.....

Sad to say, no I am not better. I'm trying the 25 day round of diflucan treatment right now (as per the recent PubMed publication).

My memory is awful. I can't describe how bizarre it is. I seem normal, and then, the next day I will remember things I said that were just out there. I get confused and disoriented a lot.

I can be going along talking to someone and just out of the blue, will feel my brainpower draining. I can physically feel it. After that, I usually need to rest.

However, I am pleased to say that it is not as bad as it used to be. That was after doing IV penicillin and then, moving to Ketek (and all sorts of alternative stuff in between).

I plateaued on the ketek, but honestly, it worked like a miracle and I had no side effects. But one day......it just wasn't working anymore.

I think that the answer to your original question is more like......when we realise how bad our memories are, and then, we realise our out of character behaviour, we realise how truly ill we are. Whereas, before, we didn't know how sick we were because we were just too out of it.

So, I think it's just basically aknowledging the illness (and what it is) and the fact that a horrible short term memory is just one of the symptoms.

Does that sort of make sense? I look back on before I was diagnosed and I was so defensive about everything and denied I was making errors at work and I'd just stare at disbelief at my own handwriting and/or typing on the email.

**Hmm...I wonder if this is where lyme rage comes in***??

As I became more and more aware that something was wrong, I realised that my brain problems were part of the illness (cause I had all those other achey problems too).

Today, I totally compensate for that as best as I can. Mostly, just avoiding stress, and making sure things are taken care of at home as quickly as possible (paying bills etc).

Take care Achey! Hi ho Hi ho!!!

Hope you get to the gym. I gained SO much weight through this. I'm hoping I can maintain energy to cycle or hike it off over the next few months.

I thought at first I was looking at the 7 dwarfs.

It has been one of those days.

Have you considered heavy metals in addition to all of the other things you are addressing.

I seriously think heavy metals DEFINITELY need to be addressed.

GiGi has some great posts about this.

It is so frustrating to try to work and my brain refused to work. So eventually I just lost it and then my job told me to "get lost" too. That was 4 years ago.

Sign out "Lost In Space"

Since that time, and before my lyme dx, I have done much to detox my body from all toxins and build up my immune system, as I have been studying for my certification in Integrated Manual Therapy
(IMT).