High-dose carnitine & neuropathy

[Guest guest]

I don't know if this wil help, as these studies relate to neuropathy

and AIDS patients (there are also studies with diabetics), but

thought I'd pass it on.

     

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 TreatmentUpdate 144

NUTRITION: Long-term high-dose carnitine found to help heal

damaged nerves

Created on: 2004 October 4

Hosein SR

2004 August/September

Volume 16 Issue 5

Previous article Next article

Carnitine is an amino acid found in red meat. This nutrient can

also be made in small quantities by the brain, liver and kidneys.

Carnitine plays a role in helping to release energy from fat by

moving fats to cellular power plants (mitochondria). It appears to

have antioxidant properties and may also play a role in

maintaining blood sugar levels.

Carnitine is being tested in PHAs to find out if it can help reduce

high triglyceride levels in the blood. Another possible use for

carnitine is in the management of damaged nerves in the hands,

legs and feet—peripheral neuropathy (PN). This complication

can occur for many reasons including the following:

* damage from viral infections such as HIV

* " d " drugs such as d4T, ddI and ddC

* some anti-cancer drugs and antibiotics

* alcohol abuse

* diabetes

What the medications in the above list have in common is that

they can damage the energy-producing parts of nerve cells,

called mitochondria. Injured mitochondria cannot supply

sufficient energy and nerves begin to malfunction and can die.

Nerves in the feet, legs and hands, particularly in the skin

covering those body parts, appear to be especially susceptible to

PN. Some researchers have noticed that PHAs with PN can

develop abnormal sweating, suggesting that nerves in sweat

glands have also been affected.

One formulation of carnitine, acetyl-L-carnitine (ALCAR), may

have a role to play in the management of PN. This compound

helps mitochondria function and also appears to enhance the

effect of a chemical that helps nerves grow—nerve growth factor.

Researchers in London and Manchester, England, have

conducted an extensive study of ALCAR in PHAs with PN. Their

findings suggest that most PHAs showed some degree of

recovery from nerve damage.

Study details

Researchers recruited 21 participants with HIV/AIDS. Their

profile at the start of the study was as follows:

* average age – 40 years

* average CD4+ count – 286 cells

* average viral load – less than 50 copies

* most had symptoms of PN for about one year

In all cases peripheral neuropathy was diagnosed by a

neurologist. Before and during this clinical trial, researchers took

small samples of skin from the legs of participants for analysis.

Nerves from these samples were analysed for damage and,

during the course of the study, for their ability to repair and

re-grow. Participants were given ALCAR 1.5 grams twice daily for

up to 2¾ years. Before entering the study, all participants were

on a stable HAART regimen.

Results

As much as 76% of participants had significantly reduced pain.

Because this was not a controlled clinical trial comparing ALCAR

to a placebo or another substance, researchers cannot be

certain that the reduction in pain was caused by ALCAR. To

clarify this issue, placebo-controlled studies of ALCAR are taking

place in the European Union and in Vancouver, British

Columbia.

However, their analyses of skin samples taken during the study

found that after six months of ALCAR use, nerve fibres were

undergoing re-growth. The longer participants took the

supplement, the greater the re-growth. Nerve fibres are

slow-growing so it clearly takes many months, perhaps even

years, for the damage from PN to heal.

There were no significant changes to CD4+ and CD8+ cells or

viral load measures during the study.

The research team speculates that ALCAR may have helped

nerves for the following reasons:

* Carnitine has antioxidant properties, possibly protecting nerve

cells from the toxicity of nukes.

* By improving the transport of fats and sugar, carnitine may have

helped cells become more energetic and active, perhaps

stimulating their recovery.

* Carnitine could have helped nerve re-growth and repair by

enhancing the effects of nerve growth factor.

* PHAs with PN have been found to have decreased levels of

ALCAR in their blood and the supplement could have reversed

this.

Overall, this study goes a long way toward helping researchers

explore the role of carnitine, particularly ALC, as part of the

management of PN.

REFERENCES:

1. Hart AM, AD, Montovani C, et al. Acetyl-l-carnitine: a

pathogenesis based treatment for HIV-associated antiretroviral

toxic neuropathy. AIDS 2004;18(11):1549-1560.

2. s B, Galland S, Rigault C, et al. Beneficial effects of

L-carnitine in myoblastic C2C12 cells. Interaction with

zidovudine. Biochemical Pharmacology 2003;65(9):1483-1488.

3. Moretti S, Famularo G, Marcellini S, et al. L-carnitine reduces

lymphocyte apoptosis and oxidant stress in HIV-1-infected

subjects treated with zidovudine and didanosine. Antioxidants

and Redox Signaling 2002;4(3):391-403.

4. Hart AM, Wiberg M, Youle M and Terenghi G. Systemic

acetyl-L-carnitine eliminates sensory neuronal loss after

peripheral axotomy: a new clinical approach in the management

of peripheral nerve trauma. Experimental Brain Research 2002

;145(2):182-189.

> > I thought this was going to be an easy one. I was wrong.

> >

> > The test (not including drive to UCSF and waiting time) was

four

> > hours long. Only the first half hour, the visual portion,

> was 'easy'

> > to go through. The rest of the time was spent trying to

stimulate

> > sensory and motor nervers in my hands and feet.

> >

> > We eventually got sucess with my hands, and the stimulation

was

> very

> > much like an attack of clonus. Because of my height and the

small

> > space we were working in, getting that response took a long

time.

> I

> > have spots here and there on my skull and limbs where the

skin was

> > rubbed nearly raw to make sure we were getting a solid

electrical

> > connection. By the time the hands starting twitching as

they're

> > supposed to, I was in a lot of pain from back spasms,

brought on

> by

> > trying to position myself in the necessary ways for electrodes

to

> be

> > placed, tested, replaced, tested...

> >

> > Then she moved on to my tibial nerve, which when

stimulated at a

> > certain point on the inside of the ankles causes the big toe to

> > twitch spastically. Normally, what the test measures is a)

how

> much

> > juice is needed to generate a sensation and the amount

and

> > duration of stimulus needed to trigger the motor nerve and

get

> those

> > big toes moving.

> >

> > After giving me enough electricity to " have most people

writhing

> in

> > pain " I barely felt anything but a sensation of heat. Then she

> > pushed the charged probe hard into the flesh, to make

absolutely

> > certain the nerve was getting zapped. Now I could feel a bit of

> > vibration, but only faintly. The tech looked at me doubtfully,

> > said, " I've never given anyone this many amps. I'm going to

try a

> > little more, to see if we can get movement. "

> >

> > However, no matter how high she turned up the stimulus the

> > corresponding motor nerve was unaffected. To her

knowledge, no one

> > in history of the test has had failed to have that motor nerve

> > triggered, just me. Ain't I special?

> >

> > She assured me this would be emphasized in the report that

goes to

> > my neurologist. If one assumes the test to be valid, the result

> > means advanced demyelination of a whole cluster of nerves

in my

> > ankles and feet, rendering them not just sluggish but

completely

> > unresponsive. A strong finding in support of MS or some

other

> > demyelinating disorder.

> >

> > That's what an Evoked Potentials test is, an attempt to chart

> > demyelination of nerves by measuring the response of the

nervous

> > system to visual, audiotory and direct electrical stimulation.

The

> > test is used almost exclusively to diagnose MS, and given to

women

> > far more often than men (men are a small minority of MS

patients).

> >

> > In other words, while it will take a skilled neurologist to read

> the

> > visual and upper motor results, the lower motor results are

> already

> > in, and the verdict is near total demyelination of those nerves,

> > consistent with MS.

> >

> > The drive back was difficult. I required immediate solitude to

> focus

> > on my breathing and try to get calm. I partly succeeded, had a

> long

> > talk with my oldest brother about it. His take: " we already

knew

> > your nerves are all screwed up, every finding that makes that

> clear

> > to the medical 'powers that be' is a victory. "

> >

> > I share that view, yet the whole thing upset me quite a bit.

Bob

> > came home after work and wound up holding me for hours in

bed, for

> > comfort, until I fell asleep.

> >

> > We live separately, so he was gone when I woke up at 4am

and my

> gut

> > was spasming. Barely made it to the bathroom several times

- one

> of

> > those violent purges that just exhausts you.

> >

> > When that subsided whole-body shaking began, and I was in

no mood

> to

> > face it and immediately took a valium with a drink of water.

Back

> to

> > the bathroom, then finally, half an hour later, shaking has

> stopped

> > and I can think and type well enough to post this.

> >

> > I am not depressed or overwrought, just 'shaken', a word my

> frequent

> > bouts of clonus have given new meaning. Today there is

nothing

> > medical scheduled, but the damn Housing Authority is

coming to do

> an

> > inspection. Then on Friday my oldest brother will be here in

town

> to

> > take me to an appointment with my new MediCal PCP. I am

so

> grateful

> > not to be facing that one alone!

> >

> > We're hoping that we can get leave that appointment with an

order

> > for PICC line insertion. The prescription for IV Rocephin is

being

> > processed by MediCal now, and as soon as it's approved

we'd like

> to

> > get that treatment going. I'm at the point where I don't really

> want

> > to know much more about how bad off I am, until an

aggressive

> > attempt to treat has been made.

> >

> > This report is offered as nothing more than one person's

> experience,

> > but I do believe that experience has relevance for this group's

> > focus and submit it in that spirit, not looking for sympathy or

> > support.

> >

> > I hope you're all having better days, and hope to be having

them

> > soon myself.

> >

> >