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Posted by saved10 (Member # 18413) on :
 
Went to my nuro appointment yesterday. They don�t know what I have, there�s two possible:

Parkinson�s and Lyme or is the Lyme causing the Parkinson? They don't know!!!! [confused]

I am a difficult case they say. I have white matter lesions, which was detected on my MRI.

They want to do a Pet scan on me and want me to see another Nuro!!!!

My hand is curling on my left side, so are my toes on both feet. I�ve tried everything.

They put me on Requip to control the curling and the tremors. I've been in treatment for 2 years, last 5 months on a PICC Line, Rocephin

My LLMD wanted me to se a Nuro
 
Posted by seibertneurolyme (Member # 6416) on :
 
In my mind it would make more sense to do a SPECT scan than a PET scan. If the PET finds a problem with the basal ganglia you still won't know if it is infection related. But if the SPECT is abnormal you would at least know if lyme and tickborne diseases are causing hypoperfusion.

Pretty sure I have told you about hubby in the past. His tremors are pretty much gone after 10 years. I am convinced that they were mostly from bart.

Please remember that tremors could mean either too little or too much acetylcholine. That has to be balanced with dopamine. Parkinsons meds just made hubby stiff and did nothing to stop his tremors. He did much better with phosphatidylcholine. It at least seemed to change the tremors from constant to more episodic -- would last for a couple of hours and not all day. Eating was always a major trigger for him.

I am very doubtful that a neuro will be able to help. Even the ones who know about lyme seem to know very little about the coinfections.

Bea Seibert
 


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