New study on NAC and PD

[rond56]

Thoughts?

ncbi.nlm.nih.gov/pubmed/312...

[jeffreyn]

Some recent thoughts:

healthunlocked.com/parkinso...

[SELFMeder]

Have been taking NAC 2400mg per day for three years to mimic the treatment group in the latest reported Harvard/Mass General trial. Used to also take NAC infusions every 3 weeks or so. With the new positive findings, I am going to resume the NAC infusions.

I also rigorously exercise, including rowing, resistance training, and John Pepper’s recommended fast walking 4xwk, have deep massage and Feldencrais sessions 2x Mo, and take daily PD Symptom-specific supplements such as Mag Glycinate and CoQ10 for muscle spasms, over the counters for insomnia and constipation, etc.

My symptoms are much , much milder now than when I was first diagnosed with PD about 5 years ago and definitively confirmed 3-1/2 years ago by DATScan. Indeed, before adopting this regimen, I used to feel like I had some kind of disembodied soul, a la The Devine Comedy, inside my being!

In short, I have experienced regression, not progression in symptoms. But I can’t skip more than 3-4 days in my regimen without risking higher symptom experiences.

Hope something in this is helpful to others...

[rond56 in reply to SELFMeder]

Thank you for your input.

[park_bear in reply to SELFMeder]

Awesome!

Do you get your NAC infusions from a regular physician , or?

[SELFMeder in reply to park_bear]

From an MD who has moved to practice integrative med.

[TL500 in reply to SELFMeder]

Do you check your liver often? I take many supplements and some people say they worry about my liver. What do you think? thanks.

[SELFMeder in reply to TL500]

I have a comprehensive blood panel 2 x yr by my internal medicine MD. (I also have Gilbert’s syndrome. But it doesn’t seem to be a factor.)

[TL500 in reply to SELFMeder]

Thanks.

[TL500 in reply to SELFMeder]

Where you said "risking higher symptoms" does that mean back to symptoms level before taking the NAC or worsening/progression of symptoms? Thanks.

[SELFMeder in reply to TL500]

That’s the problem. I take NAC (2400mg per day) with Sinemet (25/100, C/L) 3 times per day ... in the midst of a host of daily supplements and OTCs that are symptom-specific, and along with a fitness routine and twice monthly Feldencrais (for neoplasticity) and deep massage sessions (to help wake up and orchestrate my muscles).

Together, all these elements enable me to feel pretty normal most of the time, way better than during my first year following dx. (I’m 5 yrs from dx and age 75.) But when I pull the out of my routine, as in the case of extended travel where I can’t exercise intensively, I usually need a recharge. That would seem to indicate my phys ex routine may be the most important thing I do.

I also experienced a big positive delta across my PD symptoms when I started using Sinemet. Which Would put it right up there with phys ex, which is anchored every other day by fast walking (a la PDP John Pepper), rowing and resistance training.

The NAC supplement was recommended 3 yrs ago by my integrative med MD, Dr Glen Rothfeld, Rothfeld Aoothecary in Waltham, Massachusetts. That’s where I order my NAC capsules. It’s been nice to learn that the first two small-sample NAC Trials have shown very positive effects on PD symptom reduction.

One more thing. A growing # of med experts have been speculating there may be different types of PD. If so, many trials may be jumbling several types of PD together, which may mask the positive effects on one or a few of the PDP types. For this reason, I keep taking CoQ10 at the suggestion of a very senior Neurologist at Mayo, even though some big trials have shown it not to be efficacious.

A bit rambling... hopefully of some help!

[TL500 in reply to SELFMeder]

So when you were only taking meds but no NAC etc. you didn't feel as good as now?

which brand NAC please? Thanks

[KERRINGTON in reply to SELFMeder]

Hi Are you still on NAC ?

Happy Thanksgiving !

[SELFMeder in reply to KERRINGTON]

Still taking NAC. Only supplement I can find that has had 2 successful PD trials. Take it 2xDay amongst a sea of other drugs.

Recently consulted with a psychiatrist. Thought he might now a little something about the brain...

He recommended low dose Lithium (5 zing/day) and “Tibetan Herbs for PD.” Search for latter on Google. I’ve started taking the low-dose Lithium just before bed, which he also says can help with insomnia.

Hope this helps.

[KERRINGTON in reply to SELFMeder]

Your posts are always helpful, and I read/reread them. I'm thinking of making an appt with your Integrative Physician.

Is he easy to talk to ? Thanks...

[Astra7]

I’ve taken it since diagnosis. 3 years ago. Very little progression but still early days. I take 2 x 600mg a day.

[TL500 in reply to Astra7]

Which brand? Thanks.

[SELFMeder]

Dr Glen Rothfeld

Waltham, Massachusetts, USA

HES HAS HAD PD FOR 20 YRS!