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. Posted by joalo (Member # 12752) on :
Up.
Posted by mamalicious (Member # 43611) on :
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
Posted by surprise (Member # 34987) on :
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-
Posted by dali (Member # 24458) on :
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.
![[confused]](graemlins/confused.gif)