A cure for muscle weakness??

[janetah]

Originally Posted by kenki

I was suffering from Chronic Fatigue for several years following a heart bypass surgery. In 2008 I was finally diagnosed with PD and found a UK specialist in CFS called Dr.Sarah Myhill.

Kenki

Have you come across Richard van Konynenburg's Glutathione Depletion/Methylation Cycle Block theory on CFS http://vimeo.com/36511892
I've got CFS and my brother's got PD. I've been following a version of Richard's protocol which involves taking B12 and other supplementation to boost glutathione levels.
More info http://phoenixrising.me/research-2/g...nynenbury-ph-d

There are some really interesting things he says including the link between autism and CFS (he postulates the same mechanism but at different ages) and the multiple effects of glutathione depletion.

[Arsippe]

Originally Posted by reverett123

Glad to see the interest. As to the doses - at this point I am simply going by the label on the theory that that gives some basic safety (althiough these all seem to have good safety profiles used alone). I am looking for a plan that maximizes my ability to function all day. That may mean that instead of taking five grams of creatine each morning that I take two grams four times daily. So there is going to be a lot of trial and error here.

This has me wondering about something else. The official line is that some unknown agent for unknown reasons and by unknown means acts in a way that kills dopamine producing neurons in the substantia nigra. This a slow process that may take 20 years to reach the 80% point which is suposedly when we notice symptoms. There aremany problems with this story. If I am figuring right, I am losing four percent of my neuron population each year. That means that when I hit the 80% mark that in just another five years I should burn through the remaining 20%, at which time I should be dead. Unless for some unknown reason there is a major change in the rate of loss. Then there is the problem of the dead neurons. When they do an autopsy and find dead neurons in the right places, they pronounce it "PD". But if they don't find dead neurons the prouncement is "Misdiagnosis". That part of the game is rigged so they are always right.

But not everyone agrees with that theory. One question that comes up is "Are the neurons really dead or are they just in a coma?" and most importantly, "Can we wake them up?" So, I have some questions. If poorly functioning mitochondria are a factor, what is the effect on the neurons of the SN? As thier energy efficiency drops, does their production of dopamine follow? If we supply Ldopa will that deficit be overcome for a time? The waste products from making dopamine are known to be toxic to neurons. When we start on that treadmill, what is the effect on the rate of decline? etc.

Rev, it is Wednesday Evening. As of Monday this week, I added the L. Carnitine to creatine in my regimen. This white rat is reporting, in a two day interval, improved mood and somewhat of a diminishment in tremors. Let me add During this two day timeframe, I have put in 3o minutes per day on exercise bike. But I wiil tell you, I think the improvement owes much to the creatine plus L. Carnitine because I have exercised before, but without this kind of feeling of well being. I have not felt this good in many, many months. The creatine gave me strength in my legs and arms. Then, when I added L. Carnitine, my mood sweetened and there was a little less tremor. And, i had a little less overall poverty of leg and arm movement. Go figure. Anyway, do your due diligence and research carefully before you even think about trying these things. They may not be right for you.

[reverett123]

This will probably be brief, but I don't want to hit everyone with a pile of info later.

I have done some preliminary testing with each of the four that I have mentioned and I have added a fifth. I have identified some problems with some of these but I think that they will be specific to me, as I willl explain.

As I have mentioned before, Conducter71 (Laura) and I share a special problem that probably is coincidence but which gets in the way of my alchemy. It is a tendency for the potassium in my blood to run and hide in the nearest cell when it is startled by things like insulin. Insulin triggers a similar process which moves glucose the same way. If you want detail try wikipedia for "hypokalemic periodic paralysis."m looking at

The problem is that some of these things that cause a similar action
take them all by boosting the action of the tiny pumps that are responsible for all the excitement.

Unfortunately, I keep running across the effect on the potassium shift when the pumps are energized by the ATPase. All four of my original choices seem to work well and I hope that someone will pick up the torch on these. It already looks like creatine is a winner when handled properly. And L-Acetyl-Carnitine with lipoic acid added looks good. NAC has a lot of advantages, too. So, you may actually want to take all of them.

(I wrote all the above, hit a key, and "POOF!" everything was scrambled. It took awhile but I think it is strightened out. But beware!)

So, bottom line, if we are to know details on these then one of you has to take the ball.

Which brings me to No 5. I went looking for things that *inhibit* ATPase, figuring that that might be the ticket. I suppose that I shouldn't be too surprised. It turns up everywhere we look seemingly.

Turmeric does the trick and quite well if I judge by the last two days.

My time to first "ON" this mornng was 30 minutes, about half what it was a wek ago. I stood up from my bed on my first try and made it though the darkened house with minimal problems. I slept the night through last night. I took one capsule of a turmeric extract which claimed to have the equivallent of seven grams within. That lasted me about 12 hours. Some minor dyskinesia lasting about an hour. Muscles still feel strong. Looking good!!

[soccertese]

RICK,
still curious about your creatine dosage.

interesting article
Managing the patient with newly diagnosed Parkinson disease
http://www.ccjm.org/content/79/Suppl_2/S3.full

[mrsD]

I wonder if you have tried d-ribose?

This is a precursor to Adenosine formation and adenosine is
part of the energy trio of molecules: AMP, ADP, and ATP.

Rather than inhibiting ATPase, perhaps you could increase ATP production instead? D-ribose has shown promise in chronic fatigue patients, fibromyalgia and some of us use it on peripheral neuropathy forum to help with mitochondrial energy production. Some websites include PD treatment with it as well.

Start at 5grams a day for week, and raise slowly to 10 if need be. Comes in a powder form available at iherb.com and Puritan's. Capsules are not strong enough and cost more. Mix in water or juice...it is mildly sweet and pleasant alone in water.
It is best to take at night because it tends to facilitate sleep. Adenosine is also the sleep signaling molecule that begins the sleep cycle.

[reverett123]

Thank you, MrsD. By a strange "coincidence" my wife, in her eternal attempt of trying to get me to throw some of this "junk" away, confronted me with a bottle of the Jarrow product. Now I know what it is and will give it a try. -Rick

[reverett123]

Soccertese-

Re the creatine, I was taking approx three to four grams per day. Athletes routinely follow a pattern of several weeks of "loading" using 25 g or more daily, but I see no reason to push that particular envelope with so much to be sorted out.

-Rick

[reverett123]

It has been just over seven weeks now and I seem to be continuing a slow but steady improvement across the board! I have no objective measure on this, but subjectively I sincerely feel that there has been a fifty percent improvement in overall quality of life and it continues at a similar rate. And over the past week or so I have begun to notice that I am beginning to skip a pill here and there. Where I was waiting for the next two hours to tick by so that I could take another sinemet cr (200/50) and another sinemet 100/10 just so I could hobble to the loo, today I took the pair at 6:00 AM, 8:00 AM, and 10:00 AM. But I forgot the Noon and 2:00 PM doses and took a pair fifteen minutes ago at 3:00 PM just to "be safe" and because I have things that I want to do this afternoon. That last statement alone is a marvelous thing!

For a couple of weeks now, I have also found myself taking the last meds of the day around 8:00 PM instead of 10:00 PM. If I push things too much on this end I do find myself hobbling to bed in an "off" state but still in better shape than before. This time period was when I was most prone to freezing.

I have not frozen in several weeks!

I am sleeping soundly, but I awaken about 3:00 AM. Most mornings I go back to bed about 5:00 for another couple of hours. Nightly bladder output had been excessve (1 to 1.5 liters) but it is now about half that and normal the rest of the day. Also, much less lower back pain upon arising.

Time to first sign of "ON" is now 30 min to 60 min (was 60 to 120).

When I first get out of bed I have to be careful but there is definite improvement.

I am getting out into the world more and am having fairly normal excursions.

I am taking a single 500 mg capsule of creatine on alternate days and a single 750 mg cap of acetyl-l-carnitine on the other days and then taking one day off. I am also being careful to seperate those from the sinemet to avoid uptake conflicts.

To say that I am tickled pink would be putting it mildly.
Rick

[soccertese]

so the affect is due primarily to carnitine and creatine?

[reverett123]

I suppose that it could be one or the other (as opposed to both). But I have resisted the urge to add variables this time pretty well. And it might be partially due to the every other day dosing which is an herbalist approach. And, of course, it could just be me. I could have some kind of weird shortage of something. I tend to doubt the latter because the research was pointing in this direction before I arrived on the scene.
-Rick