I had intended to wait another month before posting on this one, but the group could use a little positive push right now, so I'm going ahead.

A month ago, I had a problem. I was losing the use of my legs. It was most noticeable at night. If I tried to get out of bed the muscles went into tetany and would not function. I was pretty maxxed out on meds. 24 mg of requip plus about 1500 mg of sinemet total in both forms. As Laura mentioned, I have been dealing with some unusual problems for a year now and it was taking that much medication to make it through. Taking something every two hours. Having to hit the bed by 8:00 PM just to avoid crawling or, worse, a total lockup.

I must interrupt myself here to explain that this is actually a two-part report with the intent of giving you as much info as possible. Now, back to the story.

I had been half-heartedly toying with an herb called scullcap for some time, but without any discipline. It has been listed in the USP years ago as a nerve tonic and it showed promise. So I began taking two capsules of 850 mg each at bedtime and it did the trick on the night time tetany, but not on the insane medication load needed to get through the day.

So, a month ago I was taking the scullcap; silymarin; and saw palmetto. The latter two had been in the picture for some time and are included for completeness. Everything else was hit-or-miss. So, as I said, there was some improvement but it was very limited.

Still trying to get a handle on the meds, a week ago I started the flavonoid quercetin and was amazed. It has just been a week and my two hour tether has lengthened to four to six hours, bedtime has gone from 8:00 PM to 10 to 11:00, and medication has dropped to 900 mg of sinemet and I'm going to start fiddling with the requip today. Those are the most awesome results that I have had from any alternative approach.

Here is a reference:

1. Pharmacology. 2003 Jun;68(2):81-8.

Quercetin potentiates L-Dopa reversal of drug-induced catalepsy in rats: possible
COMT/MAO inhibition.

Singh A, Naidu PS, Kulkarni SK.

Pharmacology Division, University Institute of Pharmaceutical Sciences, Panjab
University, Chandigarh, India.

L-Dopa plus carbidopa treatment remains the first-line therapy in Parkinson's
disease. The use of catechol-O-methyltransferase (COMT) and/or monoamine oxidase
(MAO) inhibitors as an adjunct to L-dopa therapy has yielded varying degrees of
success. Quercetin, a flavonoid present in many plants, is reported to inhibit
COMT and MAO activities, the key enzymes involved in the metabolism of dopamine.
In the present study we have studied the effect of quercetin on the L-dopa plus
carbidopa combination against perphenazine and reserpine-induced catalepsy in
rats. Neuroleptic-induced catalepsy is a widely accepted animal model for testing
the drugs used in parkinsonism. Catalepsy in rats was induced by administration
of perphenazine (5 mg/kg i.p.) or reserpine (2.5 mg/kg i.p.) +
alpha-methyl-P-tyrosine (200 mg/kg i.p.). Catalepsy in animals was assessed by
using the bar test. The quercetin dose (25-100 mg/kg, p.o.) dependently reversed
perphenazine- as well as reserpine-induced catalepsy. When quercetin was combined
with a subthreshold dose of L-dopa plus carbidopa, the anticatatonic effect was
potentiated. Pretreatment with a central COMT inhibitor, 3,5-dinitrocatechol
(OR-486) (10 mg/kg p.o.), or a MAO-B inhibitor, selegiline (5 mg/kg i.p.), also
potentiated the actions of threshold dose of quercetin against perphenazine- or
reserpine-induced catalepsy. On the other hand adenosine (100 mg/kg i.p.), which
is known to decrease the release of catecholamines through an action on
presynaptic A(1) receptors, partly reversed the protective effect of quercetin
against perphenazine-induced catalepsy. Quercetin through its COMT and MAO
enzyme-inhibiting properties might potentiate the anticatatonic effect of L-dopa
plus carbidopa treatment. The results of the present study strongly suggest that
quercetin could serve as an effective adjunct to L-dopa therapy in Parkinson's
disease.


PMID: 12711835 [PubMed - indexed for MEDLINE]

Rick,

I have no luck with conventional meds extending levodopa for me beyond 2 hours. At the most, I got an extra half hour with Requip but at dosage that made me sick, so what's the point.

Greatly encouraged by your results. I don' think you mentioned how many mg if Quercetin you are taking?


Thanks!

Laura

Laura-
I am using NOW brand, 800 mg per 2 cap dose plus 200 mg bromelain. I've been taking 2 caps 3x daily but am going to try single caps today. -Rick

That is good news, Rick! I'm going to try the quercetin.

I'm even more interested in your night time tetany, and skullcap. I wonder if tetany describes what I experience - I've called it spasticity because it seems to resemble what happens with some kids with cerebral palsy. To me tetany is a continuous uncontrolled muscle contraction. After I've been in bed for a few hours, if I start to move without thinking, my legs will shoot out straight and my low back will arch. I can't stop it once it starts, but it doesn't last more than a few seconds. If I'm awake enough to move very slowly and keep one leg bending while the other straightens, I can sometimes avoid it. It also sometimes happens as I get out of bed and start to stand. It scares me a little because it's so strong and unstoppable. If this is anything like what you experience, I'm off to get some skullcap.

How does the bromelain fit in?

Wendy-
No, tetany is more what I was experiencing. But it would be worth trying it anyway. Scullcap was listed in the old USP as a "real" medicine in its day and considered a "nerve tonic" so the effect may not be limited to a tight set of symptoms. If that doesn't do it, how is your magnesium, calcium, and potassium? -Rick

PS- I cut my dose in half today as I cut back the requip and successfully kept the good effect while staunching my dykinesia almost completely.

I think you might be onto something, Rick. I've just used 250 mg. of quercetin a few times in the last four days, and already feel different. Last Nov. I started feeling that miserable downhill slide when you're reminded that this is a progressive problem, my meds just weren't working as well after one and a half good years. I feel like I'm back to last Oct. and feeling good. Haven't tried decreasing my meds yet.

This is very preliminary but I'm feeling a little optimistic. Now I just need to increase the amount, be more consistent and add some bromelain. I'll keep you posted.

Trying to get a bit more disciplined, today I took a single 800 mg capsule at 6:00 PM along with a single sinemet CR 50/200. A couple o weeks back that would have lasted just two hours. It is now 9:55 and other than some mild DK I am doing well.

Rick, and Aunt Bean, I read somewhere that it is best to take these bioactive natural supplements separately from pharmaceutical medications, that their efficacy is reduced by the chemicals. I mention this because Rick said that he takes his with sinemet. I wonder if either of you had a view on this. I have not experimented sufficiently to know one way or another. They recommended leaving a two hour gap, something that is just about possible if wearing off is not too fast........

I have followed this thread with great interest, especially about the apple link as I had a sudden improvement following a couple of days of drinking (very expensive) organic fresh apple juice on special offer, very unexpected, and am thinking of looking for some quercetin. Goodness knows, the drugs we are prescribed do not enough for what we take them for, and too much that we would choose to lose.....

Lindy

Lindy-

Take a look back at my first post on this thread. They are talking about using it to increase the effectiveness of the synthetics and ascribing a joint MAOI and COMT inhibitor action against cataleptic rats. To me, the latter is similar to freezing.

I would like to know however, just how minimal doses of sinemet would affect things. And would just using it with our own dopamine stores do anything? -Rick

Took yesterday's last dose of sinemet plus quercetin at 6:00 PM. Went to bed still "on" at 11:00 PM. Good night's sleep.

Up at 7:30 AM. Took 1x Sinemet CR 50/200 plus 1x Sinemet 10/100 plus 1/2 capsule Qu (about 400 mg);

8:00 On (quick as it gets for me)

9:00 Hints of going "Off", repeated 7:30 dosing

9:15 Off

9:45 back On

11:00 Requip 8 mg

1:00 Sinemet CR 50/200; plus Sinemet 10/100

Currently 3:00 PM and On

Intent is to hold out until 4 PM and take Requp, then at 6 PM repeat last night.