Acetyl L-Carnitine
 

How is this useful for PN? What does it do?

So many questions going through my head.

Sue

Sue, if you decide to get any supplements I can recommend iherb. I ordered a bunch of stuff from them and it got here quicker on standard shipping and cheaper than my order from a supplier in Qld.

Acetyl carnitine is for people with suspected mitochondrial damage.

It is used in chemo damage and damage from the drugs to treat HIV positive patients. Some drugs damage mitochondria and so giving supplements for this can help.

If you are interested here is a link to more information.
http://neurotalk.psychcentral.com/post653568-5.html

Carnitine declines with age...so older patients may not make enough for their needs, since our body makes it for us.
The acetyl form is better absorbed than the plain carnitine.

This is our thread on mitochondria:
http://neurotalk.psychcentral.com/sh...t=mitochondria

Ride on- what did you order?

MrsD- do you think it's worth giving them a shot? I havent, had chemo or anything like that?

Sue:)

Carnitine is not toxic, and for the most part easy to tolerate.

It can be expensive however. If you want to try it, do it.

Start at 500mg a day and increase 500mg increments weekly to 2 grams if you need to. Give it 3 months. If nothing, then that is a sign you probably don't need it. Take in divided doses, as it
is not well absorbed in the GI tract. The acetyl form is a bit more absorbed so is recommended mostly now.

I think stopping the wine for now, would be a first step.
See what happens. All those sulfites! If you went to a doctor that would be the first recommendation, in fact.

My doctor has me taking Carniclear, liquid. It is good. Great for my Chronic Fatigue Syndrome and nerves also. This has B12 and B5 also.

http://www.rockwellnutrition.com/Car...3.html#tablist

That liquid is quite expensive... Carnitine is not well absorbed orally, even in liquid form.

from http://lpi.oregonstate.edu/infocente...uts/carnitine/

It has been very good for me. Brain fog with CFS is completely gone. Most people with CFS have a bad problem with it. So good for the brain in many ways. My doctors are so knowledgeable thankfully. I hate to think about how ill I would still be without them.

Sue, I probably went a bit overboard but I haven't had time to read everything in this forum and I am a bit confused. Based on comments by mrsD and using recommendations on this thread and with a nothing to lose approach I ordered:
methyl B12 (Dr's Best)
B1 Benfionate (Dr's Best)
R-Lipoic Acid (Dr's Best)
Acetyl L-Carnitine
CQ10
Stabilised vit C
Flax seed
Milk thistle

I also bought the following locally.
Treos B plus
Folic acid, not sure if I'm taking the right type
Fish Oil

I can't tell you the strengths as I'm away from home at the moment so I can't check. I'm progressively going to try all of these and watch for results. I've decided that I need to get serious about keeping a diary of what I'm doing and how I feel.

Steve :)

Wow what a list. If you don,t get relief from those, then l don,t know what will help!

Haven't got anything yet my blood test doesn't,t show l am deficient in anything.

Have you had a blood test yet?

Sue

See my neuro for first appointment tomorrow, that will no doubt be the beginning of the fun.

I've been wondering if you have National Health insurance there?
They may have steps to conserve resources and visits may revolve more around cost effectiveness rather than YOU.

I accidentally ordered L-Carnitine, not the acetyl version. I've had look on the forum and from what I can see its absorbed slightly less efficiently, does that mean I should take higher doses?

For now when starting you're okay. Just don't take your dose all at once. Spread out during the day, may give you better final absorption. L-Carnitine was all there was for a long time, so it still will work some.

We have a national scheme but I also have private health insurance. I can't help but feel that a lot of the problems that I'm reading about with poor service are due to ignorance or laziness or both on the part of the medical professionals.

The capsules are 850gm, should I break them up?

I suppose it would not be necessary to break them up...that is alot of work.

I could not find any comments in papers about empty stomach vs with food, but did find that l-carnitine is absorbed in the intestine partially by passive diffusion and some active transporter. It is the transporter that has the ceiling of ability.

So if you take it on an empty stomach it might work better.
Remember we make our own carnitine, and unless this is damaged you already have some. You don't have to flood your body with it.
The RX drug Carnitor, does not have directions or warnings about taking with food or not.

People who get positive effects from carnitine report less muscle fatigue as evidence it is working. So you may see improvements, and that would reaffirm your taking it correctly.

Sally- what is CFS?

My capsules are 500mg, so l might start with that and see how l feel. The thing that worries me with all these vitamins, is the body getting used to being fed these fit/min, and when you stop the body isn't able to make its own anymore?

mrsD-We have medicare here, which what l think is your National Health Insurance. We get a portion of our accounts refunded back to us when we make our medical expenses claim.
I am wondering if its worth me taking our private insurance. I have never needed it, as l think our public health here in Oz, is very good.
But with PN now, maybe it could be wise.

RIDE-ON- will be thinking of you today. All the best. Yes this is where the fun begins for me too. Woke this morning and nearly burst into tears thinking about what l was just diagnosed with yesterday. I just can' t believe my body has let me down like this. Here l was thinking l was the healthiest l could ever be and l would outlast them all. Struggling to get my head around it all.
I have blood tests coming up next week. I just wish they could find out why l have PN...:(

Sue

Sue, I have been really struggling mentally with this. I have always been very fit and active and looked after myself. I am the main bread winner and I have 2 beautiful young kids. All of this keeps weighing on my mind, but I also realised all this thinking is not helping, if anything it is probably having a negative effect on my body. For me a main challenge is getting my head in the right place.

Thank you for your thoughts.

Shezian, it is Chronic Fatigue Syndrome. I have had it 20 years. With my supplements, it is finally doing very well. I also have POTS. Postural Orthostatic Tachycardia Sydrome. Three years for that. It is Autonomic Neuropathy with a little peripheral also. My doctors have that doing well too with my supplements.

The POTS is what I am trying to improve from now. I am so much better. It is so awful though. The blood pools, will not stay in the brain and heart when standing.. Much more to it though.

Our bodies don't make a lot of vitamins; some, like C & D, we don't make any of, so we must get them from outside sources like food or supplements (sunshine in the case of D - when that's safe, of course). Some supplements we do make naturally.

However, if there's a medical need to take some, whether we're not manufacturing them, not enough of them, aren't processing them sufficiently.... Whatever the reason, if we need more to address some particular issue (like PN) then IMO the risk of not taking them outweighs the risk of suppression.

Some people (like type 1 diabetics) are going to need supplementation for life. Our bodies make R-Lipoic Acid, and it's essential for life. I may be making enough of it to survive, but if taking more helps my PN symptoms, I'm going to take it - for however long I need to - including for life.

Everyones' dietary needs change as they age; and everyone ages/changes at different rates. I view the vitamins & supplements I take as part of my diet - like food. If I stop eating something, and become deficient in it, it doesn't matter to me if it's a vitamin, or supplement, or protein, or carbohydrates, or water, etc. I need all of these things to keep myself alive and well (as possible). :rolleyes:

Doc

There are many things in the food we eat.

I find that comments like " I only eat once a day" says to me the person is possibly lacking in many things.

For example... this came up on another post:
Glycine. This is an amino acid that is present in root veggies like beets. Glycine is necessary for many biochemical functions in the body. It provides a methyl group to methylation reactions. If you cannot synthesize it yourself, you suffer and depend on food sources.

Other important things in food are
choline (eggs)
methionine (animal protein)
sulfur containing amino acids
and there are more, but I am not going to search them
now, because of a time constraint.

So it is not just vitamins and minerals, which ARE important, but the other nutrients in foods we depend on.