[reverett123]

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]

[Conductor71]

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

[reverett123]

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

Originally Posted by Conductor71

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

[wendy s]

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?

[reverett123]

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.

Originally Posted by wendy s

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 s]

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.

[Aunt Bean]

Rick...it's been a week...is the quercetin still doing it's job and how much are you taking now? Are you still doing Bromelain with it and if so why???

[reverett123]

Originally Posted by Aunt Bean

Rick...it's been a week...is the quercetin still doing it's job and how much are you taking now? Are you still doing Bromelain with it and if so why???

Oh yes, it is still doing its job. I have run into an unexpected problem, however, that should not exist for most. You have heard Laura and I discussing our own weird problems? That involve a shifting of potassium from the blood into the cells and is triggered by insulin, which is normally what happens with the glucose from our food. Well, it seems that quercetin wants to help there as well, so it sparks up the endo system. Unfortunately, this means that my insulin is more efficient and, bottom line, gets in the way of the quercetin each morning. Actually, it is more complicated than that and if I'm not very careful to exercise at just the right time, I end up paralyzed for two hours.

But that arises from the overnight fast (called the "dawn phenomenon") and by noon things have flipped around and things work better than they have n a long time. I estimate that I have doubled the length of my "on" time and halved the daily dose over the last month. Dk almost gone too. Biggest problem is the insulin-potassium thing and I am sneaking up on it.

Took one cap yesterday w/400 mg qu and 100 mg brom. (I think the latter helps with absorption.)

[Conductor71]

Originally Posted by reverett123

Oh yes, it is still doing its job. I have run into an unexpected problem, however, that should not exist for most. You have heard Laura and I discussing our own weird problems? That involve a shifting of potassium from the blood into the cells and is triggered by insulin, which is normally what happens with the glucose from our food. Well, it seems that quercetin wants to help there as well, so it sparks up the endo system. Unfortunately, this means that my insulin is more efficient and, bottom line, gets in the way of the quercetin each morning. Actually, it is more complicated than that and if I'm not very careful to exercise at just the right time, I end up paralyzed for two hours.
)

Two things:

How long did it take for you to benefit from increased "on time"? I seemed to get maybe a half hour longer from sinemet. I was hoping it might be that I just needed to have it in my system for a couple weeks. All they had at local health food place was 500 mg which I took once daily for a week. Was disappointed in results and left it alone. This week, I have had return of the paralytic weakness...on a less epic scale. I'll have a dose period where meds do not work and the weakness/can't walk bit dominates. It seems to always be the second dose of the morning no matter what actual time it is- this tells me it has to be potassium-insulin related. Usually eating something around same time helps; I can even have an egg and it seems to help. I have also noted that noshing on a banana keeps me smoother with meds over all. Beyond that, I really on Rick to figure out all the details :-)

Thing 2:

Prior to this week of weakness, I had two weeks of feeling really well. Very fluid forget I have PD kinda days (taking pills is like breathing now so not a big disruption. Those weeks I started curcumin and ensuring my blood sugar did not drop with a banana and crackers to keep me fueled at work.

I was shooting for the moon in trying to extend my on time but wanting it all fluid quality time. Looks like I can't have both :-( Rick, if you figure out the secret to this, please pm me.

Laura

[reverett123]

This potassium shift problem is going to render worthless anything I report in-so-far as the rest of us are concerned. If anyone else is testing this, any data would be particularly valuable.

Laura-
I noticed improvement the first day but I have not had another as good. I'll take a guess at what is going on, though- One of the claims for Qu is that it helps with insulin resistance. Anything that increases the flow of glucose from blood to cell may very well do the same with potassium, thus leading to our problem. Things that buffer insulin release (such as an egg for breakfast or "grazing" instead of having a meal) act to smooth things out.

Also, there is what is called "the dawn phenomenon". During the night, glucose and insulin both drop. Along about 6:00 AM and until 9 AM or so, our liver starts rebuilding the glucose levels in the blood and the pancreas starts upping the insulin to move that glucose into the cells. As a result of this our systems differ from morning to night and what works in morning behaves differently in evening.

Right now, I am taking the Qu at dinner and it has resulted in a much longer and improved evening for me. But if I try to start the day with it, then I'm shot for the morning. So I'm trying to get that sorted out. Two things- exercise timing should have a big impact and adrenaline as well. The former positively and the latter negatively.

Originally Posted by Conductor71

Two things:

How long did it take for you to benefit from increased "on time"? I seemed to get maybe a half hour longer from sinemet. I was hoping it might be that I just needed to have it in my system for a couple weeks. All they had at local health food place was 500 mg which I took once daily for a week. Was disappointed in results and left it alone. This week, I have had return of the paralytic weakness...on a less epic scale. I'll have a dose period where meds do not work and the weakness/can't walk bit dominates. It seems to always be the second dose of the morning no matter what actual time it is- this tells me it has to be potassium-insulin related. Usually eating something around same time helps; I can even have an egg and it seems to help. I have also noted that noshing on a banana keeps me smoother with meds over all. Beyond that, I really on Rick to figure out all the details :-)

Thing 2:

Prior to this week of weakness, I had two weeks of feeling really well. Very fluid forget I have PD kinda days (taking pills is like breathing now so not a big disruption. Those weeks I started curcumin and ensuring my blood sugar did not drop with a banana and crackers to keep me fueled at work.

I was shooting for the moon in trying to extend my on time but wanting it all fluid quality time. Looks like I can't have both :-( Rick, if you figure out the secret to this, please pm me.

Laura