Parkinson's Disease Tulip


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Old 04-27-2008, 07:09 PM #71
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Default That's great news

I would monitor those things that have improved very carefully since you have stopped the ginseng, to see if they stay as improved, continue to improve, or begin to decline. So hard to quantify, but it might help you determine which, if not both, of the agents was responsible for the improvements, mucuna or the ginseng. Whatever the case, it's great that you are feeling better AND taking less meds too, and thanks for sharing it all.
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Old 05-01-2008, 12:50 PM #72
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Default More misgivings

This morning I had a major blood sugar problem. It was my own fault but it was also a warning shot across the bow. It started with cookies for breakfast. Stupid, I know. Anyway, I had a terrible morning. As I usually do when I have the miseries, I read. Among other things that I read was the post that TenaLouise put up on hypoglycemia.

Mucuna is effective at lowering blood sugar and we don't know how effective. Considering my experience this morning I suspect that with sustained use it may become very effective. So, that set me to some serious reexamination of MP. In addition to the question about blood sugar, I have a couple of others. One is about its anti-trypsin action. Like limas and soy, MP blocks an enzyme called trypsin in your GI tract that is needed to digest your food. Its absence can lead to, among other things, intestinal blockage. The heat of cooking breaks down the anti-trypsin factors. But MP powder is uncooked. So that is question number two.

Number three is related to the fact that it works so darned well. I am sure that it is more than just the extra ldopa. I could duplicate that with extra sinemet. In fact have done so on numerous occasions. It feels different and it comes on faster. It feels good, in fact. So, why?

The first two points have a little research behind them, but this last is pure speculation on my part. Take it for what it is worth. Some of you may remember the blue-green algae craze of about 15 years ago. Thanks to an aggressive MLM campaign, everyone was selling it and trying to line others up for their own "downline". At the time I looked into it and backed away. The bacteria involved were called cyanobacteria because they produce tiny amounts of cyanide and tiny amounts of cyanide make your nervous system "happy" - at least for awhile. It stimulates it in a way similar to cocaine.

Research on MP as animal feed shows cyanide in the raw bean. I haven't found how much but the answer is probably a tiny amount. It might explain the reason the stuff works so well. And that is the heartbreaking part. The damn stuff works very well.

I did find one study from 1999 where chickens were fed ground raw MP both raw and roasted and at levels as high as 30% of calories. The chickens that ate the raw bean for 40 days weighed only a third as much as the controls and had much higher mortalities.

http://scholar.google.com/scholar?hl...-8&oi=scholarr

Bummer.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-01-2008, 03:39 PM #73
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Hi Rick,
well, as always thanks for your courageous explorations of this topic and willingness to share your experience. I have been using mucunca for about ten days with mixd results, some very positive, but also a sense that it interferes with something in my digestion lately.

But before we entirely throw the baby out with the bathwater or whatever, the fact is that I have seen many reports on-line from people who have been using it for years and feel that it is effective and helpful. SO that makes me not to want to entirely push the eject button on this one... altho great caution is always advisable. That's just a prelim first reaction, but I' m going to think more about the whole thing. Others???
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Old 05-01-2008, 04:36 PM #74
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Default First Time

Tried it for first time today (DopaBean). It worked about as well as 1/2 of a 25/100 pill might, with no dyskinesia. I realize this is only "poking my toe in the water" but I want to tread very cautiously. I'll titrate slowly as I see positive results, hopefully. I'll keep you posted.

Keith
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Originally Posted by Fiona View Post
Hi Rick,
well, as always thanks for your courageous explorations of this topic and willingness to share your experience. I have been using mucunca for about ten days with mixd results, some very positive, but also a sense that it interferes with something in my digestion lately.

But before we entirely throw the baby out with the bathwater or whatever, the fact is that I have seen many reports on-line from people who have been using it for years and feel that it is effective and helpful. SO that makes me not to want to entirely push the eject button on this one... altho great caution is always advisable. That's just a prelim first reaction, but I' m going to think more about the whole thing. Others???
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Old 05-01-2008, 05:49 PM #75
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Default Maybe I need to reboot

and start afresh. I was hoping it would be a viable replacement for either sinemet or requip so I was taking some pretty high daily totals and also spreading them throughout the day so there was no "break" in intake. One day I was up to 50 g total with no requip at all and two and a half sinemet cr and did just fine vis-a-vis PD symptoms. I did have belly cramps last night but I think we can write that off to the other two beans I had yesterday (pintos and kidney).

So I am going to take a day off and let the system settle, then begin again. But if I were early in the game and not taking so much dope already, I do think it would be very doable to buy some years just with the mucuna.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-04-2008, 08:33 AM #76
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Default Starting to make sense

Figured a few things out-
1- The bleeding question I raised about Zandopa is inherent to mucuna itself and is, in fact, used to advantage in treating certain bites of poisonous snakes. But it seems to require a high dose. Use your bleeding when you floss as a gauge.

2- There are enzymes in mucuna that block trypsin in your small intestine. Again, high doses over a sustained period can make it a serious problem. Heat breaks the anti-trypsin agent down without affecting the Ldopa. I had had two nights of stomach cramps. Baked the mucuna at 350 degrees F for five minutes and seems to have taken care of the problem.

3- I had been trying to use mucuna integrated in with the other meds. Sinemet, in particular, to piggyback on the carbidopa protection. In particular I wanted to take advantage of the fast "on" in the mornings. Started having major problems getting anything OTHER than the mucuna to work. Worried about the possibility of some shift in receptors. But KISS as they say. Mucuna acts so fast compared to meds and it has such a high protein content that it was blocking either the uptake from the gut or the receptors in the brain or both. By taking it first thing I was, in effect, starting a daily cycle that meant that mucuna was, indeed, the only thing that worked. Started today the old, pre-mucuna way and everything works like it did including the slow start.

So, now, I tinker with schedules.

-Rick
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-16-2008, 05:45 PM #77
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Default And a final word (for now)

Much as I hate to, I am going to suspend my mucuna experiments, at least for now, due to some of the most painful stomach cramping I have experienced. This may just be me. I am pretty far along PD-wise and take lots of Requip and a fair amount of Sinemet. In seeking to replace them I was up to 50 g daily of mucuna and did, indeed, pretty much do without the store-bought stuff for a couple of days. But the cramping was kind of scary. Never experienced anything like it - just clamped down and held for several hours.

So, I am going to back off for awhile and maybe take a look at precursors. As to mucuna, if I were newly diagnosed I would be all over it and use it to avoid the meds as long as possible. I may well come back to it if I get down to where I don't need so much, but for now I'm saddlin' up and heading west. Going to start myself an amino ranch.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-17-2008, 04:21 AM #78
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Default reduce mucuna dose dramatically with same effect

Quote:
Originally Posted by reverett123 View Post
Much as I hate to, I am going to suspend my mucuna experiments, at least for now, due to some of the most painful stomach cramping I have experienced. This may just be me. I am pretty far along PD-wise and take lots of Requip and a fair amount of Sinemet. In seeking to replace them I was up to 50 g daily of mucuna and did, indeed, pretty much do without the store-bought stuff for a couple of days. But the cramping was kind of scary. Never experienced anything like it - just clamped down and held for several hours.

So, I am going to back off for awhile and maybe take a look at precursors. As to mucuna, if I were newly diagnosed I would be all over it and use it to avoid the meds as long as possible. I may well come back to it if I get down to where I don't need so much, but for now I'm saddlin' up and heading west. Going to start myself an amino ranch.
Rick: See below from an earlier posting. You can reduce mucuna dose dramatically with same effect if taken with reduced amount of sinemet

"But that's not the whole story: the enzymes which greet levodopa as it enters the brain have some identical twins in the bloodstream outside the brain. Levodopa which gets converted to dopamine in the peripheral bloodstream (that is, outside the brain) is of no use to the brain. The presence of these enzymes in the peripheral system means that for every molecule of levodopa that makes it to the BBB unchanged, there are many more that get converted to dopamine and get turned away. This creates a problem. You have to take a whack of levodopa in order for a sufficient dose to enter the brain. And then there's all that excess dopamine in the peripheral bloodstream looking for a home. Some of it can be used by your kidney; some can be used for regulating blood flow. The rest will cause nausea, vomiting and general unpleasantness.

Enter carbidopa. It acts as a bodyguard for levodopa, keeping enzymes at arms length. It does this well enough to allow five times as much levodopa to reach the brain. At the BBB, carbidopa gets turned away. This is convenient because once levodopa enters the brain we don't want carbidopa present to protect levodopa from the enzymes which will convert it to dopamine. When levodopa and carbidopa are taken together, a much higher percent of the levodopa reaches the rain. So the amount of levodopa taken can be reduced accordingly; this, in turn, prevents side effects by reducing the amount of excess dopamine in the peripheral bloodstream.

All levodopa pills come with enough carbidopa (or a similar drug) to protect the levodopa during its trip through our digestive system and bloodstream to the brain. Carbidopa is never 100% effective in its bodyguard action but it makes a big difference in the amount of levodopa that makes it to the brain.

Fava and mucuna beans do not appear to contain anything corresponding to carbidopa. From a medicinal point of view, the lack of carbidopa in the beans creates a problem. For an adequate dose of levodopa to reach the brain, a lot of beans have to be eaten. This is unhealthy, both because of the large amount of levodopa that gets converted to dopamine in the peripheral system and because beans typically contain small amounts of toxins. Bean toxins don't cause any difficulty if the beans are just eaten occasionally or in small amounts. But frequent meals of large helpings of beans would not be healthy.

In the USA, carbidopa is available by itself (under the trade name Lodosyn). Because it is a specialty item, it costs twice as much as a levodopa pill which has the same amount of carbidopa plus the levodopa. In Canada, Lodosyn is not an approved drug. So taking a Lodosyn pill with a small helping of beans is not an option.

At present, I have a prescription for 25 mg Carbidopa/ 100 mg Levodopa. Sometimes I just take the pill. But whenever convenient, which is most of the time, I break a pill in half and eat enough fava bean sprouts or mucuna bean powder to provide the other 50 mg levodopa. My assumption is that the bean levodopa will be able to piggy back on the carbidopa from the pill. Also, I know I am getting 50 mg levodopa from the pill so if my estimate of the levodopa content of the beans is a little off, the total error is less than it would be if I relied entirely on the beans. So far, this is working very well. But I'm in the early stages of PD and my system is more adaptable than it will be 10 years from now. "
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Old 05-17-2008, 06:42 AM #79
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Lightbulb DOMPERIDONE aka LODOSYN AKA MOTILIUM®

FOR THE EXTREME NAUSEA they used to have me fill a script in Canada
called DOMPERIDONEwhich is now called Lodosyn -of which I was able to get at KU
it was because my sinemet made me so nauseated I vomited...

http://www.medicinenet.com/domperidone-oral/article.htm
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GENERIC NAME: DOMPERIDONE - ORAL (dom-PAIR-eh-doan)
Medication Uses | How To Use | Side Effects | Precautions | Drug Interactions | Overdose | Notes | Missed Dose | Storage

USES: This medication increases movement through the digestive system. It is used to treat symptoms of stomach disorders. It may also be used to prevent nausea and vomiting caused by certain medications. Due to safety concerns, this medication is not to be used by breast-feeding women to increase production of breast milk.


HOW TO USE: Take this medication by mouth as prescribed usually 30 minutes before meals and at bedtime. Do not increase your dose or take this more often than directed. Your condition will not improve any faster but the risk of side effects will be increased.

SIDE EFFECTS: Headache, dizziness, dry mouth, nervousness, flushing, or irritability may occur the first several days as your body adjusts to the medication. Trouble sleeping, stomach cramps, hot flashes and leg cramps have also been reported. If any of these effects continue or become bothersome, inform your doctor. Notify your doctor immediately if you develop: chest pain, slow/fast/irregular heartbeat, swelling of the feet or ankles, difficulty urinating, swelling of the breasts or discharge from the nipple in men or women, menstrual changes, sexual difficulties. If you notice other effects not listed above, contact your doctor or pharmacist.

PRECAUTIONS: Tell your doctor your medical history, especially of: history of breast cancer, allergies. Limit your intake of alcoholic beverages. This medication should be used only if clearly needed during pregnancy. Discuss the risks and benefits with your doctor. Domperidone passes into breast milk. Due to the potential risks to a nursing infant, breast-feeding while using this drug is not recommended. Consult your doctor before breast-feeding (see also Uses section).

DRUG INTERACTIONS: Because this medication enhances movement in the digestive tract, it may affect the absorption and action of other medications. Therefore, it is important to tell your doctor of any nonprescription or prescription medication you may take, especially of: MAOIs (e.g., furazolidone, phenelzine, selegiline, tranylcypromine). Do not start or stop any medicine without doctor or pharmacist approval.
______________

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MOTILIUM®
Janssen-Ortho
Domperidone Maleate
Upper Gastrointestinal Motility Modifier

Action And Clinical Pharmacology: Domperidone is a peripheral dopamine antagonist structurally related to the butyrophenones with antiemetic and gastroprokinetic properties.

Domperidone effectively increases esophageal peristalsis and lower esophageal sphincter pressure (LESP), increases gastric motility and peristalsis, enhances gastroduodenal coordination and consequently facilitates gastric emptying and decreases small bowel transit time.

The mechanism of action of domperidone is related to its peripheral dopamine receptor blocking properties. Emesis induced by apomorphine, hydergine, morphine or levodopa through stimulation of the chemoreceptor trigger zone (situated outside the blood-brain barrier) can be blocked by domperidone. There is indirect evidence that emesis is also inhibited at the gastric level, since domperidone also inhibits emesis induced by oral levodopa, and local gastric wall concentrations following oral domperidone are much greater than those of the plasma and other organs. Domperidone does not readily cross the blood-brain barrier and therefore is not expected to have central effects.

Domperidone elevates serum prolactin levels but has no effect on circulating aldosterone levels.

The mechanism of action of domperidone is related to its peripheral dopamine receptor blocking properties. Emesis induced by apomorphine, hydergine, morphine or levodopa through stimulation of the chemoreceptor trigger zone (situated outside the blood-brain barrier) can be blocked by domperidone. There is indirect evidence that emesis is also inhibited at the gastric level, since domperidone also inhibits emesis induced by oral levodopa, and local gastric wall concentrations following oral domperidone are much greater than those of the plasma and other organs. Domperidone does not readily cross the blood-brain barrier and therefore is not expected to have central effects.

Domperidone elevates serum prolactin levels but has no effect on circulating aldosterone levels.

Pharmacokinetics: In man, peak plasma levels of domperidone occur within 10 to 30 minutes following i.m. injection and 30 minutes after oral (fasted) administration. Plasma concentrations 2 hours after oral administration are lower than following i.m. injection, and this is likely the result of hepatic first-pass and gut wall metabolism. Peak plasma concentrations are 40 ng/mL following an i.m. injection of 10 mg, 20 ng/mL after a single 10 mg tablet, and 70 to 100 ng/mL after oral doses of 60 mg (tablets or oral drops). The half-life was calculated as approximately 7.0 hours in each case. The degree of human plasma protein binding was calculated from tritiated domperidone concentrations of 10 and 100 ng/mL as 91.7 and 93.0%, respectively.

The major metabolic pathways for domperidone in man are hydroxylation and oxidative N-dealkylation, the products of which are hydroxydomperidone and 2,3-dihydro-2-oxo-1-H-benzimidazol-1-propionic acid, respectively. After oral administration of 40 mg 4-domperidone to healthy volunteers, 31% of the radioactivity is excreted in the urine and 66% in the feces over a period of 4 days.

Indications And Clinical Uses: In the symptomatic management of upper gastrointestinal motility disorders associated with chronic and subacute gastritis and diabetic gastroparesis. Domperidone may also be used to prevent gastrointestinal symptoms associated with the use of dopamine agonist antiparkinsonian agents.

Contra-Indications: In patients with known sensitivity or intolerance to the drug.

Domperidone should not be used whenever gastrointestinal stimulation might be dangerous, i.e., gastrointestinal hemorrhage, mechanical obstruction or perforation.

Also contraindicated in patients with a prolactin-releasing pituitary tumor (prolactinoma).

Manufacturers' Warnings In Clinical States: Dopamine receptor blocking agents elevate prolactin levels; the elevation persists during chronic administration. Tissue culture experiments indicate that approximately one-third of human breast cancers are prolactin dependent in vitro, a factor of potential importance if the prescription of these drugs is contemplated in a patient with previously detected breast cancer. Although disturbances such as galactorrhea, amenorrhea, gynecomastia, and impotence have been reported, the clinical significance of elevated serum prolactin levels is unknown for most patients. An increase in mammary neoplasms has been found in rodents after chronic administration of dopamine receptor blocking agents. Neither clinical studies nor epidemiologic studies conducted to date, however, have shown an association between chronic administration of these drugs and mammary tumorigenesis. The available evidence is considered too limited to be conclusive at this time.
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Old 05-17-2008, 09:14 AM #80
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OK - Yesterday evening was a high-stress event and, as a result, I woke at 3 AM and couldn't go back to sleep. Got up and took two 4 mg Requip (8 mg total). Nothing. Zilch. Took the same again at 5 AM with same result. So, at 8:45 AM I caved and took one Sinemet CR (50/200) and one teaspoon of mucuna. Fully "On" in 30 minutes!

That and Imark's post got me to thinking about dosage. My first real test some time back was with homemade capsules and I got results with just two grams. But in trying to replace as much of the regular stuff as possible I got up into the high dose range. So maybe it would be worth going the other way and see what the minimum dose combined with meds might do. I guess I'm still in the game after all :-)
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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