LymeNet Flash: Doe anyone have myoclonus with lyme disease?

This is topic Doe anyone have myoclonus with lyme disease? in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/33182

Posted by Imove2 (Member # 7164) on :

I have Lyme disease with myoclonus. I take klonopin 3 time a day,however this does not stop the unnatural gate walk. I also have problems with the muscles in my ear contracting. Ive tried IVIG and 90 days of Rocephin. Rocephin has made my host only sleep. I'm on Plaqinel and Bioxin and I'm back to day one. Increased headaches from neck to the eyes,Small red spots have appeared on my legs again, swollen lymph nodes, and movement order has increased Does anyone have any suggestions for the unnatural gate and contraction of the muscles in the ears? Also I cannot have any light in my eyes or any change in enviroment. I walk around all day with sunglasses.

Thank you
Imove2

Posted by treepatrol (Member # 4117) on :

What is myoclonus?

Myoclonus describes a symptom and generally is not a diagnosis of a disease. It refers to sudden, involuntary jerking of a muscle or group of muscles. Myoclonic twitches or jerks usually are caused by sudden muscle contractions, called positive myoclonus, or by muscle relaxation, called negative myoclonus. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Myoclonus sometimes occurs in response to an external event or when a person attempts to make a movement. The twitching cannot be controlled by the person experiencing it.

Yes that happens to people with lyme. Still always tell your LLMD

Posted by Aniek (Member # 5374) on :

Welcome to Lymenet!

Yes, there are other Lymies with myoclonus. There has been a good bit of discussion on the board lately. I have pretty mild myoclonus, while others have much more severe myoclonus.

The search function doesn't seem to be working very well. If it works for you (there is a link on the upper right of the screen) just put in a search for "myoclonus" and many threads will come up. You can also search for the poster Terter, who has been extremely helpful to many of us dealing with myoclonus.

I'm pretty new to myoclonus, so I can't offer much advice. I do believe there is a connection with diet for me though. My myoclonus got much worse when I was one a bad diet, high in sugar and saturated fats. It declined when I went on a much healthier, low carb, sugar free diet.

-Aniek

Posted by Imove2 (Member # 7164) on :

Thank you for your comments, however My LLD Dr. and neurologist are very informed of my Myoclonus. My problem is I'm not understanding my ears and unnatural gate walk. Also my diet is not high in fats or sugars. I weigh next to nothing now. I believe their is more than just the Myoclonus going on because my legs are not tremors.

Thank you Again
IMove2

Posted by treepatrol (Member # 4117) on :

Newbies List

WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in
Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
Support Links LLMD's

Lyme State Info Cheryl's
LYME DISEASE TREATMENT & DIAGNOSIS
Cheryl's LDT&D
Lyme Disease Misdiagnosed As ...
Art Doherty Misdiagnosed
Art Doherty Lots a Links

Conflicts in Lyme

How to Search Courtesy of Danq
TC LymeNet Links for New Members
TC 50 Questions

TC Warning To Posters

Lida Mattman

DISEASE INFO - COINFECTIONS

Newbie's Lingo

Links for family members

Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society

Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M

Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B

MP Controversy
MP 2

Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!

Labs
MDL
Igenex Labs
Q-RIBb
Western Blot Info
FDA It is important that clinicians understand the limitations of these tests

Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )

See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Western Blot
Blood Brain Barrier
ABX `s Cross Blood Brain Barrier

Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia

Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Herxheimer Reaction Explained

Candidiasis

Quote Lida

Ilads

Yeast Problem Diet too
ZIPZIP Thanks

IntestinalFlora

Parasites
Put word Diarrhea in Search
Morgellons
Infestations

More Tick Disease

Infectious Disease List

Tularemia
Tularemia

Tularemia Rabbit Fever

Mycoplasmal Infections
Mycoplasmal CDC

Alzheimer's

ALS

Lida M
Good Article ALS MS And More Etc
Good Article ALS
ALS
Lou G ALS
M S
MS
Danette MacDonald
I'm not giving up
ALSO trigger MS
Lyme a hidden danger
The saga continued
Tom Grier
Links

Garlic Proper way to eat it
Garlic

Check Diet Link Atkins Diet

PORT-A-CATH (catherter)
Abx's Port

Prolotherapy

Transmission Lyme
Transmission Fleas Mosquito's Food Etc
Transmission Etc

Transmission Art Doherty

Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections

Good Site Canadian Lyme Disease Association
FDA on Lyme Testing

InsuranceLaws
Medical Records Privacy
Legal Help
Legal Help
Legal Help
Legal Help
Legal Help

MatthewGoss Site

GreatSite
MedicalDictionary

Cheryl's Site

MorphologySimplified

Tonsils crimson crescents

Killing Lymphocytes By Spirochetes

Wealth of Info

Support
USA Support

SupportGroups Canada

Canada SupportGroups

Associations, Foundations, and Support by Country

Marnies......... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1

In a Nutshell P2

Part1 Long over Due
Part2
Part3
Part4
Part5
Part6
Part7

Updated in a Nutshell
For My Friends

Canlyme MAG
Silver Discussions
Silver Treatments

Help with Meds

Help! Free Meds

Vitamins you should Know

Tests Synonyms Guide

Lab Tests Looky

Blood Donor Info
Pain Info

Female Related Problems
Female Issues
Unplanned Pregnancy
Pregnancy
Pregnancy?
TC Link Pregnancy

Insurance SS

Disability Help Minoucat Bunches of Goody's
Permethrin
How to apply Permethrin

How to apply Permethrin Pic

Permethrin Site

Discussion on Repellants

Tick Testing

Herbs Be Careful
HerbsCancer Center
Psychiatric Lyme

Fallon & Tager Report

Duramater NeuroPsych Info Kids&Adults
Neurologic Lyme
Neurologic Lyme

Dirty Truth
Sporadic Schizophrenia
Psychiatric Manifestations
Columbia Lyme

Scans & How they Work

How UltraSound Works
Explains LD50 Chemicals Toxicities
MSDS SITE
Silver
Interested in what Trolls are?
1.

Remember This
Rules

Success Stories
ALDF Four Poster Coup

LD Chat Room Links
Spirochetes Pics Link
SPIROCHETES FORMS 1
SPIROCHETES FORMS 2
SPIROCHETES FORMS 3
SPIROCHETES FORMS 4
Conspiracy Theories
US Patent Pathogenic mycoplasma

A copy of this is stored in computer Help section.

Updated 04/12/2005

[This message has been edited by treepatrol (edited 13 April 2005).]

Posted by Lymetoo (Member # 743) on :

Hi there! There's a member here named "terter" who posts every once in awhile about myoclonus.

You can find her by doing a search for "terter" or by clicking on the page numbers at the bottom of this page.

She posted not long ago, so she shouldn't be hard to find.

Welcome!

------------------
oops!
Lymetutu

Posted by Imove2 (Member # 7164) on :

Thank you
I have finally emailed her. In hopes of a little help. Again I cant Thank you enough.

Best of Care
I MOVE 2

Posted by hiker53 (Member # 6046) on :

I have lyme related myoclonus. The klonopin can contribute to the unnatural walk, but I had that before I started the klonopin, so I think it is part of lyme.

I also have ear problems--mainly high ear pressure and some ringing and vertigo. A physical therapist has helped me a lot with exercises for balance and that helped my walk.

I do find the more stimuli(crowds and noise) the more off balance I get. I also "walk like a drunk" when I am tired.

Good luck and God Bless. Hiker.

Posted by lymesux (Member # 6248) on :

Hi,
I have what sounds like alot of the same problems as Hiker and my myoclonus are like seizures - used to only come on after a seizure, now they happen 3 times a day (or more)

Doc just switched me to mirapex .25 3 times per day. Haven't started it yet.

Posted by Imove2 (Member # 7164) on :

Hiker 53,
I have the same problems as you. I had the unnatural gate before I even began the Klonopin. If I get tired same reaction walk like a drunk, My movements are all on the right side. My gate makes me walk to the right, the tremors are all on the right, and my head jerks to the right. I find they also come from the stomach making me jerk forward with noise and I find myself out of breath.
The Movement disorder comes on with the Stimuli of noise, environment,and stress.
If some of you are suffering from spinal headaches due to neck and back pain. I've had much success with injections of Toradol.

Thank you Again
Imove2

Posted by Ms. Myoclonus (Member # 6750) on :

Hello Imove2,
I have simlar symptoms to you-myoclonus predominantly in the upper body, light sensitivity, walking like I'm drunk, an usual bending of the knees while I walk.

I have not discovered anything that helps the gait problems, but my myoclonus has been helped considerably by zonegran and avoiding triggers. I recently started B-12 shots, and I feel like they are helping as well.

My most unusal trigger is looking out of the corner of eye. I have to completely turn my head to look at anything or it will trigger myoclonus. Normal triggers are metallic sounds, light touch, being surprised, flashing lights.

Feel free to e-mail me. I'm interested in keeping in touch wiht other people with myoclonus and Lyme. As we increase in number, I think we will begin to be recognized by the medical community.

Take care,
Ms. Myo

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