Well, here is my update-a quick version I hope! Well, it turned out to be long...

-computer died, bought my daughter's

-son had to go to ER for shoulder football injury, and has to have Physical therapy for 3 weeks..

-the same exact time in the ER with my son, my myoclonus started...why? Because I needed to eat, stress from his injury, etc. What did I do, hid behind a curtain at first, took my Klonopin and Lamictil, then waited 15 min. and took more Klonopin, another 15 min and took another....then-ran out of meds.

-started having TOTAL BODY MYOCLONUS...talk about embarrassing....while we were waiting for the x-rays of my son, I was transfdrred to a gurney and taken to another ER! I opened my planner, which I had previously written my dx, docs name, meds currently taking, and what drugs I am allergic to. ER's suggestion-

"Does Ativan work for you?" GRRRRRRRRRRRRRRR are you kidding!!!!!!!!!!!!

I told them that my condition is caused by LD,was proven by the head of the boad of Neurology NOT to be psychosomatic!!!!!!!!!!!!! -as the info was right in front of them, and all that I needed was 2 more milligrams of Klonopin, some food and a bit of time for everything to kick in. I told them that I have had this for over 12 years, and I know what to do. What did I get?-

An IV, and bloodwork-probably a toxicology screen!!!!!!, and a long wait...3 %$#@#$% hours of total body myoclonus,(with me flopping all over the bed, jacknifing, hurting my neck, banging my arms on the railings, trying so hard not to cry... until my husband yelled and demanded some attention for me.

What did I get then? 2 milligrams of Klonopin and a meal!!!!!!!!!!!! What I had asked for at 7:00, and got at midnight!!!! By then I had not eaten in over 12 hours.

Prior to midnight I had to wait for tiny myoclonus to subside after the hellish 3 hours of it...and for the meds to kick in.

I told them that I would be left with a little paralysis-don't worry, just get me a wheelchair and get me the heck out of there!-Finally they listened, I got what I wanted, and they got rid of me-probably what they thought was a complete psycho.

IODITS! I never even told my doctor this story yet- who lives 3 hours away....I have gone over on my cell phone minutes...IF the hospital had called him, I would have gotten quicker and proper treatment, and he would have called to check on me. I will call him on Monday.

More excitment....2 days later I had to bring my youngest daughter to the same ER!!!!

Everyone said-"weren't you just here"...how wonderful to be so popular as to stand out in a crowd.....she had a bad bladder infection and a flu like virus. Oh we were only there for 6 hours.

Instead of giving her a quick urine check...they had to do everything of course...when I said at the doc's she had white blood cells in her urine, and that IV Rocephin would work, as before, for the infection, and some sodium chloride would work for her dehydration. Oh no, she had to be catheterized to get a real good sample, etc.

What did she get? Sodium Chloride and IV Rocephin!!!!!!!!!!!!After yet another LONG WAit...GRRRRRRRRRRRRR, and was told to take the double dose of abx her doc gave her THAT WE HAVE AT HOME.

But this time I was prepared. I took my meds on the way to the ER. Took a bottle of water and some cashews, and asked for a sandwich after 3 hours. Guess what? Only a few myoclonic twitches.

End of story. Now aren't you glad you read this uplifting story!

Well, that's quite the update. Stupid ducks. Sorry you had to go through that. They think they know everything and they don't know sh*t and don't even have any shame when they realise they are WRONG.

Last night I came down with the burning all over the body and my husband was asking me if I want to go to the hospital and I am like What for they don't do anything. Everything is a virus, funny how rocepin clears that right up eh?

When ever I mention lyme to people they look at me with such a blank stare like I am speaking chinese and don't understand a word I am saying.

I hope your son and daughter are doing better. And you too.

Well, we are on the road to recovery here-at least my son and daughter. I still have little episodes of myoclonus, BUT I KNOW WHAT TO DO!!!!!!!!!!!!!!!

Well, I tried magnesium for a month-no change

What works for me the most-are my two anti-seziure meds, 2-3 hours of resting...I mean in bed, in the afternoon, frequent meals, lots of fluids, avoiding my triggers (stimuli-loud music, bad smells, bumps in the road...etc.), trying to deal with two teens-though good ones-I try to keep the stress level at a minimum...etc.

The stress of the hospital-with people I thought were seeing me as a looney toon, and having no food or drinks...and worrying about my son, was a receipe for diaster. I am glad I got smart the second time around, and avoided problems.

I have an idea. We should have our DOCTORS-the ones we trust...write a short note to keep in our wallets/pocketbooks explaining what we have, and what to do for it. This might have us be believed if we have an ER emergency.

Maybe it would hold more water if it were from them instead of written by ourselves...you know, us that have no experience with our own symptoms and meds, and need so much attention and need to be put down and treated as idiots in every ER visit......-then have to pay or have a large co-pay...we love extra bills....GRRRRRRRRRRRRR

Well, I just don't get the age old question why people in the medical profession just don't get informed!

EVERYONE I talk to knows someone who has or "had" LD! Then they tell me what symptoms they are left with....and it sounds like active LD to me!!!!!!!!! I tell them briefly about other tick borne diseases, and they look at me like I am really crazy...or they say that they will take my advice and go back to their doc...it gets a bit old after awhile.

Every once in awhile I come across a person in the medical profession (I was in the medical profession until LD left me disabled), that has had a personal experience with LD-only then do they really listen.

Well, we can try to educate one person who wants to be educated at a time..."you can bring a horse to water.....the old saying...

Thanks ever so much to listen to my excessive venting.

I wonder if you would like to try mg malate if you haven't already. I was told by a doc to take 6 tablets twice a day, and it helped clear my head up alot within days. It can't hurt and it might help.

Why do you think this would help with myoclonus, which is rapid neuron firing from the brain and spinal cord? Is it because of the brain involvement? Is this good brain "food" ?

Just wanted to drop in and say hi. Sorry to hear about your anti adventures in ER.

Will be glad when you can put all of this behind you.

While I was searching for answers, I listened to a panel of docs on a television program.

They mentioned that the death rate at the hospital in LA went down tremendously (forgot the stats) when the medical personnel went on strike!!???

I loved reading your account though hate that you had to go through all that.

What IS their problem?! Is it hearing the word "Lyme"? Respecting a female patient? Giving some benefit of the doubt to the actual patient? Just their sheer arrogance and stupidity?!

You sound like you really know what time it is regarding how to handle your symptoms and had some good ideas for helping others when at the mercy of ducks.

Thank you so much for the details...that made my crazy life with my son's illness feel more like standard operating procedure.

I tend to automatically blame myself for not being able to figure everything out while being manhandled by ducks. This week has been a stand out in that area for me.

You really helped put some of this stuff in perspective.

Glad your kids are on their way to better health. They are lucky to have such a smart mom. Hope you're doing well,too.

With LD, and apparantly other tick borne diseases that the docs are not so familia with, it is most of them that have a standard procedure to ask if you want Xanax, or Ativan! They seem to think that we are nuts.

If we have info with us that has proof of our illnesses-like positive testing results, as well as the info I mentioned before-doc's number, meds listed and dosages, as well as allergies-all written in a letter BY our docs, maybe then we would be believed.

I think the next time I see my LLMD neuro, I will ask for one!

Let this be a lesson to us all. PROOF is the possible ticket to combat duck brain disease!!

Well, I learned a hard lesson-before, I just went into ER's blind, and left wishing I were blind and deaf, so I wouldn't hear the whispers and belittling stares from the ignorant ones...don't ever be afraid to stand up for yourselves or children!

The next time I might end up in the ER, I had better have that letter, and insist that the ER doc CALL my doc...I saw him just mostly standing around anyway! All they got out of me was some insurance money and embarrassment-Oh I forgot-I did get a sandwich and more of my demanded anti-seizure meds!

I have no idea why the mg malate works. But they say it's the malate and studies have been done.

Now with myclonas, I don't know, but it doesn't harm me, and no, I don't get diaherra from it.

Magnesuim before (others kinds) didn't seem to make a noticeable differnce until I went on this.

Mag has never had a laxative affect on me, no matter what kind I have used. Only CITROMAG has that affect.

It could be coincidence that my head cleared up after, maybe it would have cleared up anyway. Who knows.