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Secondary Parkinsonism? Lyme-induced?

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Old 11-10-2017, 12:29 PM   #1
Lodaloda
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Default Secondary Parkinsonism? Lyme-induced?

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!
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Old 11-10-2017, 02:42 PM   #2
johnt
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Lodaloda,

Welcome to the forum.

You say that your mother doesn't respond very well to levodopa. What doses has she tried? Has she been careful to take her drugs away from food, especially protein?

You say that she does not have ons and offs. This suggests to me that she is still producing dopamine, but in insufficient quantities to be "normal". A good sign of this is whether she wakes up feeling good.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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"Thanks for this!" says:
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Old 11-11-2017, 11:38 AM   #3
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Quote:
Originally Posted by johnt View Post
Lodaloda

You say that she does not have ons and offs. This suggests to me that she is still producing dopamine, but in insufficient quantities to be "normal". A good sign of this is whether she wakes up feeling good.

John

John,

Low Dose Naltrexone helps me to get refreshing sleep -but I refrain from taking any Levadopa after 6pm...

Kind regards,
MD
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Old 11-13-2017, 04:09 PM   #4
Lodaloda
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Quote:
Originally Posted by johnt View Post
Lodaloda,

Welcome to the forum.

You say that your mother doesn't respond very well to levodopa. What doses has she tried? Has she been careful to take her drugs away from food, especially protein?

You say that she does not have ons and offs. This suggests to me that she is still producing dopamine, but in insufficient quantities to be "normal". A good sign of this is whether she wakes up feeling good.

John
Hi John, thanks so much for your reply! I'm not sure exactly what dose she has taken, but I know that she has made a few attempts at different doses. I will have to get back to you on that. Sorry for the slow reply -- I have a 2 year old and a 4 year old so my free time is in short supply.

It's just strange because she said she doesn't really feel any different whether she's on or off the meds. I'll follow up on your questions next time I speak with her.

Thanks again.
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Old 01-05-2018, 12:16 PM   #5
Lodaloda
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Quote:
Originally Posted by johnt View Post
Lodaloda,

Welcome to the forum.

You say that your mother doesn't respond very well to levodopa. What doses has she tried? Has she been careful to take her drugs away from food, especially protein?

You say that she does not have ons and offs. This suggests to me that she is still producing dopamine, but in insufficient quantities to be "normal". A good sign of this is whether she wakes up feeling good.

John
Hello, finally following up here. Mom takes three 25/200 CL a day. I am thinking maybe she's under-medicated?

She tried her first Amantadine today and is experience pretty bad drowsiness/fogginess. I think she had the same reaction to another agonist a year or two ago, I can't remember which. So far no positive effect on her tremor.

Any advice re: the levodopa responsiveness (or lack thereof) would be appreciated. Also do the agonists take time to work, and does the drowsiness side effect wear off for some people?

Trying to gather our thoughts and questions before she sees her neuro next week.

Thank you!
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Old 01-05-2018, 01:09 PM   #6
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Sorry, there's a typo above! That should say 25/100, not 25/200!!

Thanks!
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Old 01-05-2018, 05:59 PM   #7
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Lodaloda,

Regarding carbidopa/levodopa, a dose of 25/100mg three times per day is, I think (I am not a doctor) a bit on the low side (unless your mother is a very small lady) to conclusively show that she will never respond to levodopa.

The pharmacokinetics of levodopa show that the maximum concentration of levodopa occurs about 60 minutes after taking the dose and, thereafter halve about every 90 minutes. These values are affected by what you eat. There is little carry over from day to day. So, any effect should be seen quickly. If you're not seeing an effect that could mean that the dose is not high enough to get her to the "on" threshold or that she doesn't respond to levodopa.

Levodopa is better at reducing stiffness than reducing tremor.

If she really does not respond to levodopa, that would make it worth considering an alternative diagnosis. Your doctor will probably want to give time for the effectiveness of the amantadine to become clear. But, when this is done, and if it is not effective, it may be worth titrating your mother's levodopa dose up to 600mg per day.

It may be worth taking the side-to-side tap test.

Parkinson's Disease Measurement: PwP, surveys, trials, analysis

As training, run the test 10 times, and throw away the results. Then do the test to this schedule: 30 minutes before the morning dose, 15 minutes before, just before the dose, then every 15 minutes for 3 hours. A response to levodopa is shown by higher scores as the dose kicks in.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 01-05-2018, 06:26 PM   #8
Lodaloda
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Thank you, John! This is really helpful. She is small, but not tiny... I think she is around 5'1" and somewhere in the 130's or 140's.

I'll ask her to try that timed test.

I had also started reading about alternative diagnoses but based on the info I've seen about differential diagnoses it doesn't seem like she has PSP or MSA. I am basing this on the fact that she is tremor-dominant, first presented with a standard pill rolling tremor on one side, doesn't have a lot of trouble with balance and doesn't seem to have any of the more "exotic" or aggressive symptoms that are often listed when you read about those conditions. Her symptoms are very much classic, textbook PD, the only thing is that she seems not to be very responsive to the medications. Her most bothersome symptom is the tremor. Her main symptoms overall besides the tremor are fatigue, bradykinesia, and stiffness. Her symptoms started with the altered sense of smell many years ago and ongoing issues with frozen shoulder/back spasms. Thinking back, I believe her PD started really slowly long before any of us were aware of it.

It just seems like the Lyme disease set off some kind of process in her body (brain?) back in the late 80's or early 90's. She also developed autoimmune issues and a high ANA after all of that. The first MDS she ever saw was at Duke and told her that she has "garden variety" PD and no other neuro has ever said anything to challenge that. I guess I just get stuck on the fact that she seemed to have this obvious precipitating event and hasn't had good luck with the meds so far.

Anyway, thanks for listening, it's a puzzle we are still trying to solve, just like everyone else here, I imagine.
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Old 01-06-2018, 02:11 AM   #9
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It's probably just a coincidence, but the thread started recently by GerryW on angiogenesis and PD may be of interest to your mother. She has had Lyme symptoms which according to Berghoff [1] are linked to angiogenesis.

Reference:

[1] "Chronic Lyme Disease and Co-infections: Differential Diagnosis"
Berghoff W.
Open Neurol J, 2012
Suppl 1: Chronic Lyme Disease and Co-infections: Differential Diagnosis

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 01-09-2018, 03:23 PM   #10
Lodaloda
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Hi John,

Thanks, the angiogenesis stuff is indeed very interesting. Mom saw her wonderful neuro today (she finally found a good one!) and he does think she has "regular" PD only and is probably under-medicated. We are happy to have a plan of action -- she will begin titrating up slowly, working toward doubling her dose and we'll see what happens.

Thanks again for your input. I will report back after some time passes!
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