I'm terter-a victim of myoclonus caused by LD. That sounds like I am at an AA meeting or something!

There are not too many of us out there, you know. I have helped a few people here, as well as at a movement disorder forum, find out or realize that their LD caused myoclonus, or that their myoclonus was caused by LD.

Many of us who were treated properly from the get go for LD actually stopped having myoclonus. Unfortunately I was treated too little too late, even though I was on abx and saw over 30 some docs in our tri state area some years ago.

My LLMD neuro is extremly interested in finding more of us. He is an incredible man trying to help others. He is actually using me as his one and only case study at a neuro conference. I was thrilled to give him my permission. He wants to educate doctors so that do not treat those with myoclonus like they are faking seizures or movement disorders!!!!!!!!! what nightmare stories I have...do you?

-Was your myoclonus caused directly from LD?
-Do you know what kind/kinds you have?
-How were you diagnosed?
-Are you still taking Zonegran? what is your current response?
-Have you tried other meds? Klonopin is usually the first drug of choice for most people.
-How long have you had myoclonus, and what body parts are involved?
-Do you ever get paralysis with your myoclonus? I do-briefly, if I have severe sustained myoclonus, or total body myoclonus.

I have stimulus sensitive myoclonus, absence myoclonus, spontaneous myoclonus, and more. I am taking a combo of Klonopin and Lamictil-both anti-seizure meds. I was on a trial of Zonegran with my Klonopin, but the Z actually caused me to have HALLUCINATIONS! Nix on Z for me!

So-I hope that you will see this post and answer ASAP. I have not been on lymenet for a long time due to a dead computer. Now that we have had our new Dell for 2 days, I can't seem to get off!!!

I am on keppra(200O per day) and klonopin 1.5 mg per day for the myoclonus. I tried depakote first for several months, but then the doctor switched me to keppra and then added klonopin in July when the myoclonus got worse.

I believe the myoclonus is due to lyme. I notice it gets worse right before my period and when I am very tired.

type of myoclonus: I don't know. When I have had the "seizures" they do not register on an EEG, although my overall EEG is slightly abnormal when on the meds. The neruologist said that often happens. Usually my legs jerk, sometimes the whole body. Sometime I just fall down, but never go unconscious.

A lot of stimuli seems to make my head feel funny and even if I don't physically jerk, I feel like I have a seizure in my head. Don't know if that makes sense.

If your doctor needs another "victim" to study, I'd be happy to give him/her info.

type of myoclonus: I don't know. When I have had the "seizures" they do not register on an EEG, although my overall EEG is slightly abnormal when on the meds. The neruologist said that often happens. Usually my legs jerk, sometimes the whole body. Sometime I just fall down, but never go unconscious.

A lot of stimuli seems to make my head feel funny and even if I don't physically jerk, I feel like I have a seizure in my head. Don't know if that makes sense.

If your doctor needs another "victim" to study, I'd be happy to give him/her info.

Any chance I can find out who your doctor is? My myoclonus has been getting worse, and I don't think my LLMD has the experience to treat it. I can make my email available.

Plus, I feel like I need a good checking out by a neuro. But I know most neuro's will tell me I don't have Lyme.

-Aniek

Dr. Richard Rhee
Jersey Shore Neurology
1900 Coorlies Ave.
Neptune City, NJ 07753

phone-732-775-2400-he is off of exit 100 on the Garden State Parkway.

He is a caring, wonderful, softspoken, exceptionally well read and intelligent little Korean man. He has the best bedside manner of any doctor I have ever had in my entire life. On my first visit, he spent 3 hours with me. If you go to him, be sure to mention that Terry, me, the patient with myoclonus and LD has sent you. He would be thrilled to have as many of us as possible.

Stimulus sensitive myoclonus is awful-try to stay away from your triggers. My myoclonus gets worse the day before and the day after my period too-my endocrinologist says that is because of hormonal surges.

I take about 4 mgs-more or less, of Klonopin per day, depending on the severity of myoclonus that particular day. If I have total body myoclonus including my legs-I take more. One time under my doc's supervision, I had to take 5 mgs. at once! I was loopy, but the myoclonus stopped. I take 3 mgs. of Lamictil a day too-this has been decreased so that I can take Zoloft. (a life saver for me at this time)

Severe myoclonus can cause temporary paralysis in me-thank goodness this is very infrequent on my meds! I actually was in a wheelchair for 5 years before being treated for myoclonus.

Absence myoclonus-I have that too...causes people to fall when standing, and total loss of muscle control-like slipping right out of a chair. Bladder incontinence is NOT a problem as it is in true seizures. I have never had an abnormal EEG, either-though the flashing lights parts sent my myoclonus through the roof!

Rest is so important to prevent myoclonus-I am on SS disability, so I am home to actually go to bed for 2 hours or so in the middle of the day. It is tough to schedle things, but it is better than flopping around like a fish out of water.

My myoclonus has gotten much better over time, and with the meds I am on now. Along with the Zonegran I cannot take Keppra either. The side effects were brutal. Sometimes with myoclonus, you have to try a trial of meds, combinations, and dosage adjustments. Each person responds differently.

A journal is helpful for writing down your triggers, time of day, activities and state of mind at the time of each episode. Stress also causes myoclonus in my case.

I have a home video of my myoclonus, elicited by triggering the stimulus sensitive type-flashing lights, vacuum cleaner running, pots and pans banging, etc. What a movie-an Action Flick! I actually started it out documentary style-with my 10 years or so of abreviated history of docs and meds and symptoms and hospitalizations and complications first.

My doc will use this tape, and my info-with my permission, at the NJ neuro conference as his case study-that way many docs will be informed, and not think that this is a psychological illness!!!!

Usually a small dose of Klonopin is started for myoclonus, if tolerated-then upped to a dose that works. If that does not work, other meds are added. Klonopin is addicting, but I would rather be addicted than dead of some accident!

I would love to hear more details from everyone who has myoclonus here. I will help when and if I can.

My myoclonus has been increasing, but it's still very small. My LLMD thinks it's spinal myoclonus, because it is pretty localized in my arms, head and face. I had an MRI of my cervical spine last week, and if it shows nothing she wants an MRI of my brain.

I was prescribed Baclofen, which is a muscle relaxer. I haven't started it, because I just can't handle the fatigue I know it will cause. I've got too much going on with work and school, and the myoclonus is liveable.

Here's the answers to your questions:

My myoclonus is caused directly by my lyme disease and is my number one symptom.

I do no know what type of myoclonus I have.

Certain stimuli do set it off:
someone softly touching my skin
metallic or surprising noises
thinking about jerking
driving in the car
falling to sleep

I contracted Lyme in New Jersey in 2000. At that time I had blurred vision, fatigue, and dizziness as my main symptoms. I tested negative twice for Lyme disease so doctors stopped considering it after that.

The myoclonus began in May 2004. I was diagnosed with myoclonus July 2004 by a neurologist. I was diagnosed by a LLMD with Lyme in Oct. 2004, and thank goodness I finally tested positive on both of my Western blots from Igenex.

I was first started on .5mg of Lorazepam as needed for the myoclonus. It slowed them down a bit, but I was still having 3 to 4 episodes a day. Now I know that was a lousy drug of choice.

I'm currently on 100 mg zonegran, which has cut down the episodes to maybe once a day. I'm thinking of increasing the dose, or trying one of the other meds you mentioned.

The body parts most involved are my head and arms, although my legs can also be quite active.

My worst episode was 5 hours long and affected the full body. They had to sedate me to get that one to stop. Typically episodes were 20-30 minutes long before zonegran.

I'm more than willing to share a CD-Rom video of me with your doctor. Should I mail it to the address posted? It makes for some interesting viewing as I was at a family birthday party and let's just say I shook things up!

Welcome to my shakey world! Well, one time I tried Baclofan, and I could barely function! It was terrible for me.

Remember that stress can cause myoclonus. Michael J. Fox's story is stressful.

I have had multiple MRI's-mostly they have been negative except for a teeny tiny "spot", which may or may not have to do with myoclonus.

If I were you, I would try taking a tiny dose of Klonopin to start, if you are able. It is a sedating med, but not as awful as Baclofan was for me!

Keep me posted!

terter xo

Mrs. Myo-all of your triggers are my triggers too-should we be happy...or just sympathetic toward each other???? Well is is nice to know that we are making progress and not in a sinking ship.

Dr. Rhee would be ecastic to receive your activ video! Please send it! My next visit with him is April first. My son will drive me.

Send the video with an enclosed letter in it-mark it to Dr. Rhee-personal-and mention me, and how we connected.

It sounds like the Zonegran is working for you. I just can't see being totally myoclonic free, at least for me, at this point in my life. Once a day, if it is a brief episode, is livable, don't you think? On the other hand-since there are so many meds-maybe you should add a bit of Klonopin to the Z. They go well together.

My doc would LOVE to talk to your doc-please send Dr. Rhee your info.

Take care-great talking with everyone here, isn't it? terter xo-we need all the support we can get!

The myoclonus began before MJF started to speak. It was the visual of his movement that seemed to trigger it.

Well, visual stimuli can ilicit my myoclonus in a flash..pardon the pun! Any type of fast moving things such as video games, cartoons, fast commercials, etc. This is part of the visual part of stimulus sensitive myoclonus.

Auditory stimuli is interesting too-heaven help me if I listen to classical music! To much variation in pitch too fast!!!! AHHHH really tough when my oldest played classical piano....not as bad a stimuli as listening to opera!!!!

Changes in any type of pitch, or sustained noises are a brute. Loud music, much to the dismay of my teens can be tough too! And..I love music! My son is in a band, too. Well, I do my best, and when I feel myoclonus coming on, I try to get out of the situation ASAP, or turn down the volume!

Interesting movement disorder this is...

What I do when I am presented with the visual type of stimuli, is just to avert my eyes-easy! Turn your head away, and focus on something stationary for a second.

I was tested years ago for Babesia, as well as other tick borne diseases, and always came up negative. I have no active Lyme symptoms, and have not had any for years.

The leftovers-that is what I call them are-myoclonus of course, memory deficits along with other cognitive impairments, and a bit of joint pain occassionally. I am taking the Zoloft for depression, which is helping me so much that I can't get over it! I am on SS Disability, and have been for years.

I went to cognitive therapy for a year, which helped me with everyday tasks that involve organization, using a planner, etc. It has helped some, thank goodness, but I am still a ditz. So much for my college education!

Take care-I am really enjoying "talking" to you! terter

It's nice talking with you too. This isn't something that I can really talk to many people about. I told one person at work, because I just needed to say it one day. Besides that, it's my mom and doctor who know.

I think the MJF wasn't visual stimulu as more the subliminal suggestion to my brain. It seems like I have a partial control of it. It kicks in while I'm sitting at red lights, but usually stops when the light turns green.

Has it helped you that you have the occupational therapy background? I went to an occupational medicine specialist a few years ago when I thought I had a repetitive stress injury. It didn't help much since it was actually Lyme.

My LLMD was supposed to contact Dr.R, but he is not great at follow through.

I am going to try to get another one of my doctors to contact him. We have a tape of my movements.

I take compounded injectable magnesium and B6, glutathione/ATP injections and IV glutathione w/ magnesium are also helpful.

Hey Aniek,
Thinking about jerking is a major trigger for me. I could see how looking at someone else jerk would make me want to jerk, such as your Michael J. Fox case. Of course, when I mentioned that to a neurologist, he wanted to turn it into a psychiatric disorder. Aaaah!

Hey all,
I have found several medical journal articles linking myoclonus and deficencies in B-12 and biotin. Have any of you tried supplementing with these? If successful, what doses?

Speaking of triggers, we had thunderstorms in central Texas this morning and I was shaking with each loud BOOM.

I have partial control of myoclonus, also. this is not uncommon. for instance, if I try to hold it off for longer than a minute or so-it comes on with a vengence, like it is trying so hard to get out of my body-so similiar to a sneeze.

I do drive short distances when I have my meds in me, have rested. If I get that myoclonic feeling...I then have ample time to pull over. I carry water, meds, and a snack, as well as my cell phone. If I feel I am unable to drive I just don't!

My therapy background has helped me to be more empathetic towards people, helped with effectively communicating with people of all ages, has given me a good medical terminology background, has helped me to understand tests, and read reports,and has helped me to learn the skills to encourage others. I have also taught and learned to incorporate work simplification and energy conservation techniques to use for myself-for exambple-making one side of the bed, then making the other side-instead of running back and forth a few times.

Hi nannie! get on your doc's butt to get your info to Dr. Rhee! Maybe they can brainstorm together and share our horror movies!

The more docs that study us and share info, the more word will get around about so many of us having both LD and myoclonus. Through our docs we can help others-I feel right now that that is my purpose in life.

All of this suffering and frustration, education of our conditions by our own research...etc. cannot just be talked about among ourselves. We have to spread the word, support each other, and encourage and help our docs!

Hi imanurse,

Above is a wonderful website that contains just about everything you need to know about myoclonus. I suggest that you read everything, print everything out, highlight specific parts such as:

-symptoms
-stimulus sensitive myoclonus
-and that myoclonus can be caused by disease

then, TAKE it to you LLMD. You doc can also call my neuro, and ask about myoclonus. His info is mentioned in my post.

There are many more of us that I am finding every day. Myoclonus is so very misunderstood by nearly ALL docs. Anytime I have been in the ER, or with over 30 docs, they have all thought it was STRESS or a psychological condition. I did go to a psychiatrist, who, by the way, had LD! He said that my condition WAS NOT psychological.

You may run into this-well-it looks like you already have-with the "stress" diagnosis- like most of us have. Well, don't we have stress when we KNOW we have something that isn't understood!!!!!!!! Usually in the medical community with docs-what they didn't learn in med school, they don't believe exists!

I have proof on a script in my planner that I can now show docs-from my neuro-prooving that I have SEVERE MYOCLONUS,and LYME that affects my brain, and what meds and dosages I am on. He wrote this per my request, so that I will hopefully no longer be treated as a nut case.

Please study myoclonus-use the address at the top of this post from me, and you can also look up many sites on Google.

In fact, sometimes I will intentionally tigger my myoclonus because moving feels better than feeling jittery.

Also, the longer I try to keep from not jerking, the worse the jerks will be when they come so why not trigger them and get them over with? Has anyone else done this?

I enjoy sharing my experiences with the few of you that truly understand what it's like.

I know what that feeling is like...kind of like waiting for a sneeze, and so relieved that it is over. sort of like a monster that needs to be freed!

have you looked up the types of myoclonus you have?

Tell me a bit about yourself-your age-I am 47, I have 3 children-well one is 23! Are you married...do you work? Do you feel like sharing this info with me?

I'm 26 years old and married with no kids unless you count my two pooches. I currently don't work but hope to be healthy enough in a few months to work part time.

I caught Lyme disease while doing a summer internship at a living history farm in New Jersey during college. Love the farm, hate the lyme.

How long did you have symptoms before you were diagnosed? How long did you have myoclonus before you were diagnosed? Sorry if you've answered this elsewhere.

Although I've had Lyme almost 5 years, I've only had myoclonus for the past 10 months. It saddens me that I'm coming upon my 1 year "anniversary."

My myoclonus became much worse when I started antibiotics back in October of 04. Also, I started having lots of new symptoms that I had never had before. Just wanted to give you a heads up. It may get worse before it gets better so hang in there. It's worth it!

Take care,
Ms. Myo

Mrs. Myo,

alas..my story is long, painful, horrid and brutal!

The very quickie version is that part of the time I was fighting LD-so were my 2 daughters, my Mom, my sister, and some neighbors. Our family helped each other...our church fed us for 3 weeks...my mom took a leave of absence from her job to take care of me-as I was the worst case..even when she was on IV. My husband was upset and terrified, so he worked as much as he could to escape it. I went on disabilty from my job in Occupational Therapy, and eventually ended up on permenant Social Security disability.

I was diagnosed about 15 years ago-after me figuring out what I had on my own...my GP ordered the tests-I cam up negative 3x, was getting worse so he sent me to an ID...was diagnosed there, + WB....undertreated me, told me to never come back. MANY doctors told me the same! My case was too tough for their egos!

During my first treatment I had my first myoclonus, and still have it some 14 years!

I went to over 32 docs in 3 different states for help-multiple abx at the same time, 3 IV's-2 groshongs and a portacath...herbs, supplements and pro-biotics...

My last doc-an LLMD-committed suicide....gunshot to the right temple... -he had Lyme psychosis...I spoke at his funeral from my wheelchair-even though he was crazy-he saved my life-I will never forget that.

My worst symptoms were the myoclonus-especially total body myoclonus, resulting in paralysis,I had, thoughts of suicide, hallucinations of dead mice, pain and or swelling in ALL of my bones, even my skull, burning, twitching and pain in ALL muscles, HORRIBLE cognitive problems...ie-couldn't figure out how to turn on a lightswith, match socks, figure out how to use a key...etc. AND-TONS more symptoms-heart, thyroid, etc. ER's, inpatient stays, various specialists...etc. Multiple tests and then some...

All this while, when at my worst, I had to take care of my 2 very sick girls. My youngest had auditory and visual hallucinations, spun around in circles banging into walls, had OCD-hiding toys in the couch, cutting paper into tiny pieces... her heart rate was so low that she almost had to have a pacemaker! I coudn't help her do even her kindergarten homework-too hard for both of us...hummm "circle out of 3 fruits-which two are apples"....horrid-I could not figure out the DIRECTIONS!!!!

She is left only with a bit of difficulty in school, but getting decent grades, is a bit clumsy, but a beautiful, loving, and great 16 year old-sweet 16 is in a few days.

My oldest had visual hallucinations, drop attacks, pain everywhere, migraines, visual probles-was losing sight in one eye...cognitive problems like the rest of us....tons of symptoms. She had myoclonus for a short time-WHICH ANTIBIOTICS TOOK AWAY!!!!

She is now a college gratuate who lives and works in NYC! She is left with an occassional migraine , a bit of joint pain, Raynaulds syndrome-intolerance to cold.

My girls made a great recovery, but I have permenant neuro damage.

So-that is our stories in brief form!
I found my wonderful neuro about 2 years ago who treats me for just myoclonus and now put me on Zoloft. I have been seeing a councelor for 2 months...and only now have the courage to delve deep into the black hole of myoclonus! Thank goodness for the Zoloft!

Take care, and "story" away for me!!!

It's unfortunate that you and your family have gone through so much, but others are learning from your experiences. Including me.

I'm glad to hear that your daughters are doing so well, especially the one that had myoclonus. I'm hoping I'll have the same fortune.

I started treatment in October 04, and my old symptoms got worse and I developed lots of new symptoms. But since then I have been slowly getting better. I compare my health to the stock market---constant day to day fluctuations with a long term tendency toward improvement.

I have only been on oral antibiotics and they really seem to be working for my neuro symptoms even though I always hear IV is the way to go. Well, I'm going to go the oral route until it stops working or I'm "cured."

Well, my educated guess at the types of myoclonus I have are:

stimulus-sensitive definitely---hate thunderstorms, pans, and police lights

sleep myoclonus definitely---Just when I'm the most relaxed, there I go taking off like the Kentucky derby!

action myoclonus maybe---If I am having an episode, it is worsened if I try to do precise activities like hold a fork or turn a door knob.

Take care,
Ms. Myo

We had quite a different crowd this year. My parents and sister and her family live in Fla. Right now my husband is working 5 hours south of them. We live in NJ-we are not sure how much longer he will be away. My youngest daughter is vacationing there now, over Easter break-so all of the family was there to celebrate together, while my 17 year old son, and also my 23 year old daughter from NYC were here with me.

We thought that it would just be the 3 of us, but my son's friend has been with us- as he didn't want to go on his family's vacation...another friend of my son's stopped by-and ended up eating here too! It was really nice-no stress, and everyone cleaned up!

Then, prior to dinner, my daughter's friend stopped by from Philly, then her friend stopped by from Florida.......then my son's 3 other friends stopped by!...after dinner... then all five of the guys went to play pool!!! This was after we watched one friend's video of him preaching in his own church-very different from ours-he is black and baptist. We are white, and my children are half Puerto Rican...and we are methodist/non-denominational...but not Catholic or Baptist!

Now, everytime the guys go out, I get a big hug from them all, I say, "remember, no drinking, drugs, or sex!!!" It is kind of like a joke...but we have had heart to heart talks about it all. All of my "kids" come to me with their concerns and problems-they call me Mom, or Aunt...I sing a bit and dance with them a little..acting like idiots.. until myoclonus takes over, or they kick me out....I join them briefly-then get out of their hair....they love me, but I am not prying, or up their butts!!! It is so nice for me.

It sounds like total craziness-which would give me horrible myoclonus usually, but I left the room periodically throughout the day for a nap, a quiet rest, or to watch TV for an hour. I have learned over the years how to protect myself. This is so important!

One year my husband and I had a superbowl party-AHHHHHHHHHHHHHHH what a nightmare for me-HORRIBLE total body myoclonus-ended up in bed thrashing around, with my nurse friend at my side! Too much noise and stress is a killer! No more hosting indoor parties for me!

The reason I told you all of this, was to show you a taste of my current homelife, and how I handle my myoclonus. When we have a lot of activity, or I need to get out of my middle of the day long rest time...I take an extra Klonopin, and excuse myself if the noise gets to be too much-or I change the setting to a movie with the lights out-I use candles all of the time-this seems to bring a little peace to me-and maybe a little aromatherapy? I never thought of that one!

When people have a chronic condition like myoclonus, or are fighting a monster like Lyme, they need to be aware of how much noise, stress, and excitment their bodies and minds can handle, and adjust their lives accoringly. Trying to be "normal" is the worst! Just a few words like-excuse me I have to rest now, or I am sorry, but I need to go to bed....is necessary to say to others in order for us to be able to function. If we push ourselves, there will be repercussions later-or setbacks.

Well, I can't continue to write this "book" without probably boring you to death...so-I will say goodbye-I really should delete most of what I wrote, but I think the Zoloft is turning me into a chatty Kathy-still too euphoric! Better that, than suicidal-been there...

I just discovered a new trigger that explains why it is so difficult for me to drive.

If I keep my eyes focused on a point in front of me and then rotate my head to the left or right while keeping my eyes focused on that point, I instantly feel faint and go into massive jerks. I have not had these strong a jerks in a long time so I know this is a major trigger.

I discovered this trigger while looking in the mirror to check the side of my hair. I had always thought it was odd how mirrors would trigger my episodes so often and now I know why.

Maybe you can spread a little more light on why this happens.

I wish I had a neurologist or movement specialist I could trust to go to ask these kinds of questions, but there aren't any lyme literate ones in the area. And I don't feel like being talked down to anymore.

Terter, I'm glad you had an active, yet relaxing Easter. Lyme and myoclonus definitely does change social situations, but we humans can adapt!

Take care,
Ms. Myo

At the point my myoclonus was really increasing, I had increased my sugar intake considerably and my bad fat intake.

About a month ago I decided to get back on a healthy diet. Not totally sugar free, but only carbs with high fiber, as close to whole grains as possible, and fresh fruit and veggies. Guess what! My myoclonus is way less than it was. And I never started the meds my LLMD prescribed for it.

Here's a post at wemove.org where the person has had similar success reducing sugar and other simple carbs to control her son's myoclonus. I thought it might be of interest to you.
http://www.wemove.org/cgi-bin/ultimatebb.cgi?ubb=get_topic;f=10;t=000028;p=0&r=actu

I have also noticed that if I consume lots of sugar, it leaves me feeling light headed and worsens my myoclonus. Not to mention it stains my teeth! Uhh.
Take care,

Ms. Myo