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Old 09-26-2017, 04:21 PM #21
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Default Doxycycline 20 mg progress

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Originally Posted by PDman View Post
I'm starting to take 20 mg/day doxycycline, and I'm continuing to discuss the pros and cons of this with my neurologist.
PDman,

Are you still taking Doxy? Could you give an update please?

Thanks!
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Old 09-27-2017, 09:50 AM #22
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Three more months on doxy, still no observable results.
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Old 09-27-2017, 10:18 AM #23
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Thanks, my eyes are ok. I go to a university medical center and feel I am in good hands. I don't get headaches, thank goodness. I wish I could say I am not "foggy" on a regular basis, but I am. I just posted I have no ill effects from the doxy but didn't mention that I don't see any improvement either. I had long term use of it about 20 years ago when I had Lyme and scleroderma, but that has passed. Or so it seems.
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Old 09-27-2017, 10:22 AM #24
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To private message I think you click on the name of the person and some choices show up.
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Old 10-01-2017, 01:43 PM #25
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Quote:
Originally Posted by felixned View Post
PDman,

Are you still taking Doxy? Could you give an update please?

Thanks!
Yes. 20mg/day. I don't see any clear reduction of symptoms (e.g. tremors, insomnia, orthostatic hypertension), but I really felt like the best case scenario would be that it would stop progression, which would take a long time to see. I don't think I'm seeing any side effects though.

I attended the Grand Challenges VAI event in Michigan this week, and asked a panel of PD researchers what they thought of the doxy approach. They were dismissive of it.
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"Thanks for this!" says:
Tupelo3 (10-01-2017)
Old 10-01-2017, 09:04 PM #26
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Quote:
Originally Posted by PDman View Post
Yes. 20mg/day. I don't see any clear reduction of symptoms (e.g. tremors, insomnia, orthostatic hypertension), but I really felt like the best case scenario would be that it would stop progression, which would take a long time to see. I don't think I'm seeing any side effects though.

I attended the Grand Challenges VAI event in Michigan this week, and asked a panel of PD researchers what they thought of the doxy approach. They were dismissive of it.
Thanks for the update. What did you think of this year's conference. I was there also and thought some of the presentations were great.
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Old 10-03-2017, 04:29 PM #27
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Quote:
Originally Posted by Tupelo3 View Post
Thanks for the update. What did you think of this year's conference. I was there also and thought some of the presentations were great.
That was my first Grand Challenges meeting. I'm a PhD chemist, and I was diagnosed with PD two years ago, so I wanted to learn more of the science, and also learn about how PwP act as advocates and interact with the research community. The meeting was good for both these objectives.

I particularly enjoyed the talks by Langston and Foltynie.
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Old 10-03-2017, 06:37 PM #28
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Quote:
Originally Posted by PDman View Post
That was my first Grand Challenges meeting. I'm a PhD chemist, and I was diagnosed with PD two years ago, so I wanted to learn more of the science, and also learn about how PwP act as advocates and interact with the research community. The meeting was good for both these objectives.

I particularly enjoyed the talks by Langston and Foltynie.
I didn't see Langston (I was in a meeting on the patient Rallying side). Tom Foltynie's research is very exciting. I spent some time with hm at the cocktail party. He is definitely deserving of the award they gave him.
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