LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » shoulder, neck jerking ......any suggestions?

 - UBBFriend: Email this page to someone!    
Author Topic: shoulder, neck jerking ......any suggestions?
dali
LymeNet Contributor
Member # 24458

Icon 1 posted      Profile for dali     Send New Private Message       Edit/Delete Post   Reply With Quote 
Dear ones

Hopefully you can help with some suggestions. I have had Lyme and whatever else (all the classic co-infections) since I was 23 years old.

I was diagnosed at age 40, and then underwent treatment with an Llmd for 9 months. After nine months my stomach and intestines were very irritated and I had severe gastritis. The doctor at the time did not want to discuss options and stopped treatment.

3 years later I had a very bad relapse with very strong neurological symptoms. I went back into treatment with another llmd and improved quite rapidly.

After one year we decided to stop treatment. But...I had one major symptom left...muscle twithing in my face and neck...

.two years later and I am back in treatment, with stonger doses of antibiotics and combinations that have included medications for Bartonella.

These sent twitches through the roof, and I have developed quite a severe myoclonic-dystonic shoulder jerking, and left neck jerk that will hold. My tongue, cheek, jaw muscles also involved.

Due to some potential antibiotic side effects, my llmd has suggested I take herbs for one month, get blood work done, and then we will decide the next course of action at my next appt.

My neck will get pulled to the left and back, and the shoulder goes up. I take klonopin and gabbapentin for partial relief.

Antibiotics last month were: doxy, ceftin, bactrim, plaquenil....hard for my system to handle all. I take magnesium every day (lots of natural calm and have tried every brand out there).

I feel GREAT in other areas, which is awesome, but on the other hand I am somewhat physically disabled-obviously appearance as well, but also emotionally.

Has anybody experienced this and is there any advice that would be helpful? Anything would be appreciated at this point.

This symptom has just exploded with the treatment, now I am taking a break and it is even worse....

Thank you and sorry for the long post. [confused]

Posts: 172 | From ohio | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
joalo
Frequent Contributor (1K+ posts)
Member # 12752

Icon 1 posted      Profile for joalo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Up.

--------------------
Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006.

Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
mamalicious
Member
Member # 43611

Icon 1 posted      Profile for mamalicious     Send New Private Message       Edit/Delete Post   Reply With Quote 
Twitching and involuntary movements plague me! I wish

I had a solution for both of us. I have tried all

sorts of antiepileptic drugs (in addition to

treatment) nothing stops the movements/twitching.

I take

Intermezzo at night and that helps me sleep some.

So far I've treated for Lyme, Babesia, not yet

Bartonella...

Have you had biofilm treatment? Xylitol and

Lactoferrin

Posts: 97 | From Rockwall,TX | Registered: Apr 2014  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post   Reply With Quote 
For the children with PANDAS/ PANS, which is infection driven inflammation symptoms,

and one of the symptoms can be body tics- including what you are describing, high dose IVIG is used, if it can be obtained and afforded.

Low dose IVIG is based in immune deficiencies, high dose IVIG is a higher dose of IVIG, usually given over 2 days.

Very expensive, encephalitis is the code some Dr.s use to try to get insurance coverage. Because it is brain inflammation/ encephalitis.

I am not saying this is the solution. The infections need to be treated. Just putting this information out there because of your suffering-

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
dali
LymeNet Contributor
Member # 24458

Icon 1 posted      Profile for dali     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello,
The movement disorders are difficult. I believe my lled has checked for immune function and I am within normal parameters. I will ask about this at next appt. my understanding is that if it infection, then it is likely bartonella. I currently have no cognitive symptoms and with that I am doing well. I stopped antibiotics three weeks ago and within a week my twitching got much worse. I stopped because my dr. Recommended a break due to some odd blood work results. I will very likely get back on asap. I was takin ceftin, plaqueniil, bactrim, and doxy. I did start having some good days - reduction of twitching- while on this. Rifampin was very difficult to tolerate, bactrim is a bit easier for me. Thanks for input, anybody else who has had success or experience with ivig would be of great help. Than you all.

Posts: 172 | From ohio | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.