Hi all,

My mom has PD (she occasionally posts here as well). I'm convinced that her PD is actually "Secondary Parkinsonism" based on the following:

She first loss her sense of smell many years ago during a severe bout of what we think was Lyme Disease (a borderline positive test, bullseye rash, Philadelphia suburbs, tons of Lyme there). During this time she experienced a lot of other strange neurological symptoms, such as a loss of depth perception, dizziness, extreme exhaustion, joint pain, etc. She was quite ill.

This was also around the time when her autoimmune disease(s) started. She was officially diagnosed with Scleroderma but effectively reversed it (!) with antibiotic therapy (minocycline) via a doctor at Harvard/the Road Back Foundation. She was doing well for a long time but I believe her ANA remained positive and sense of smell never really returned.

Finally, decades later, the resting tremor started (one side). So you can see why I'm suspicious that the Parkinsonism is tied to these prior issues. She also had a concussion as a child so maybe that could be a contributing factor, but I really think it was the "Lyme"/encephalitis-like event that set things off.

She doesn't respond very sell to levodopa and doesn't seem to experience on/off times, which also suggests that her Parkinsonism is atypical or secondary. She's also had periods where her symptoms have very mysteriously and impressively improved temporarily, such a recent couple of months during which her walking was pretty much normal again. So maybe the dopamine neuron loss is not progressive?

I am wondering if anyone here has any info that may pertain to her situation. I personally think it may be worth getting in to see a Lyme doctor and considering aggressive re-treatment for Lyme, though I am aware of the controversy around Lyme in general.

Also wondering if this could actually be good news for us, of course!

Mom, if you see this.... LOL. Hi, Mom!

Thanks, all!