posted
For those of you who have had motor neuron damage- 1. Any ideas as to how the infection (s) affected the motor neurons?
2. Is their damage to the axon and/or permanent demyelination?
3. Does the infection cause inflammation either along the nerve [synapases, neuromuscular junction] or does it affect acetylcholine somehow [similar to the botulism toxin]?
Tested positive/abnormal for acetylcholine antibodies...about 4-6 weeks after steroid therapy...so that probably had something to do with it. I know acetylcholine antibodies are present in MG, but this condition has progressed more like GBS or ALS. The patient [13-year old niece] still has some trace movements, but is almost paralyzed and on a vent. WB and babesia was negative, QRIBb was 1:128.
Any ideas as to how the nerve [s] are affected?
Currently on 1 g./day Ceftriaxone and 50 mg./day of Zith. Had worked up to 250 mg./day of Zith. and 50 mg./day Flagyl, but couldn't take it. She has started to produce mucous/phlegm like crazy!
posted
I don't know but it is great question, with good information too.
I'd be interested in the answer!!!
best thoughts for your neice
Posts: 208 | From Santa Fe | Registered: May 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
No- they can be normalized- like with Dave Marr-
QUOTE: I was dx'd definite ALS 3/00 and tested positive for Lyme on ELISA and Western Blot 2/01. On 4/18/01 I began an aggressive therapy for Lyme. I started a six week course of IV Rocephin followed with oral Flagyl 500 mg tid and oral doxycycline 100 mg bid. My ALS symptoms started to deminish at day four of IV Rocephin with spasticity, cramping and virtigo disappearing. Within another three days clonus in ankles and jaw became almost non-existant as well as speech problems and swallowing difficulties. Prior to IV Rocephin the spasticity and cramping kept me on my butt. My diaphragm would cramp violently if I sneezed. I also fell a lot prior to IV and managed face plants most of the time. I have not fallen once since abx. I alos changed the oil and filter in my two cars and hand washed them.
During the six weeks of IV Rocephin my ALS symptoms were mostly gone. I was left with the muscle wasting that had occurred since onset. There has been no new wasting as far as I can tell. Being a smart-*** , I felt there was no need to combine oral flagyl and doxycycline, so I laid off the doxy and started with only the flagyl. Within four days of just oral flagyl my symptoms all returned, spasticity, cramping and clonus. I started doxy and within 24 hours those symptoms started to disappear.
It is now three months since the start of abx. I have no spasticity, cramping or clonus. My reflexes fall within normal range, they had become quite hyper. My FVC went from 68% prior to abx to 88% now. I have minor foot-drop in the left ankle and the right has none. Prior to abx I had AFO's for both feet as dorsaflexion was gone. My leg strength is increasing as I am now able to walk two miles/day and continue to shave time from the miles. I could not walk one mile prior to abx.
Basically, what I am left with is a pure lower motoneuron syndrome that has left me with atrophy. My left hand, arm, both shoulders, my neck and left leg have significant loss of muscle. My right leg has rebounded the best as it was not too affected. My right hand and arm are affected but they are also rebounding nicely.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks for the reply Dave- Look for a PM from me soon. I was hoping for more responses. Get this:
I had contacted a researcher MD who had co-authored an article on Lyme in the peripheral nervous system. I thought, surely this guy could have some answers for me. He left a message with me stating, "she doesn't fit the criteria for Lyme's due to her negative Western Blot". I'm serious...I couldn't believe it. If all of us struggling with this disease would go on that criteria...where would we be????!!!!!
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