With regard to reduction look up "phototrop". This is just a compound of
omega 3's, acetyl l carnitine, and coq10. See abstract below. (They should
have added lipoic acid in the R conformation!) The common perception is
that the aggregations are gradually built up but I have found sufficient
evidence to argue against that. It appears these aggregations are being
dispensed with via lysosome degradation and that the problem is the rate of
degradation vs. accumulation. This has very important implications for a
wide variety of retinal conditions because drusen and in particular
lipofuscin appear to be the big problem.
There are a few other avenues to explore, like periodic resting of the
retinas through "palming", an idea originally promulgated by a strange bod,
William Bates. This may be of benefit re juvenile mac degen but I'm doubtful
re age related.
You may want to consider not only UV filtering glasses but also blue light
filtering glasses, blue light also oxidises various retinoid compounds in
the eye and this seems to impede phagocytosis. Get used to dim light, even
indoors, that idea that dim light causes eyestrain while reading is
nonsense. I have read one study where it was found there was more retinal
damage during those periods when circadian time would dictate an absence of
light(for humans, at night). Very odd finding but I've read other studies on
circadian dynamics which indicate circadian rhythms can have profound
effects on the impact of drugs etc. Trying using a sleep mask so as to
maximises circadian stability and melatonin levels. Melatonin is very
protective of neurons but declines markedly with age. Supplements are
available but much caution needed here, can make you very drowsy. I have
read a study showing good increases in melatonin production via acupuncture.
Yes, acupuncture can help in some conditions and no it is not the placebo
effect. Even if it was is that a bad thing?
Watch the beta carotene, focus on lutein and zeaxanthin.
The studies don't really support this selenium supplements are worthy of
consideration, also keep your iron levels low. Generally, keep fat levels
low, plenty of exercise to stimulate blood flow, and consider Ginkgo, some
trials suggest a benefit but NOT if you have wet AMD. Still not sure about
ginkgo, lots of conflicting results but it does preserve ATP production and
my suspicion is that this is very important to maintain both phagocytosis
and lysosome functions.
Whether or not I can help the girl and her parents is very much a gamble. A
great deal depends on the allele she is carrying for ABCA4. A more
deleterious type makes all my work largely in vain. Genetic testing is under
way. I am doubtful that my efforts wil yield any significant benefit but its
early days yet. I have, or at least think I have, very much nailed down the
problem to a rather discrete level, that gives me some hope. There are also
some very promising gene therapies currently in clinical trials on humans,
so trying to slow progression is worth the effort because if these therapies
work any reduction in pathology progression can potentially make a huge
difference to the girl's vision in adulthood.
Good luck in your endeavours.
Ophthalmologica. 2005 May-Jun;219(3):154-66.Click here to read Links
Improvement of visual functions and fundus alterations in early age-related
macular degeneration treated with a combination of acetyl-L-carnitine, n-3
fatty acids, and coenzyme Q10.
Feher J, Kovacs B, Kovacs I, Schveoller M, Papale A, Balacco Gabrieli C.
Ophthalmic Neuroscience Program, Department of Ophthalmology, University of
Rome 'La Sapienza', Rome, Italy.
The aim of this randomized, double-blind, placebo-controlled clinical trial
was to determine the efficacy of a combination of acetyl-L-carnitine, n-3
fatty acids, and coenzyme Q10 (Phototrop) on the visual functions and fundus
alterations in early age-related macular degeneration (AMD). One hundred and
six patients with a clinical diagnosis of early AMD were randomized to the
treated or control groups. The primary efficacy variable was the change in
the visual field mean defect (VFMD) from baseline to 12 months of treatment,
with secondary efficacy parameters: visual acuity (Snellen chart and ETDRS
chart), foveal sensitivity as measured by perimetry, and fundus alterations
as evaluated according to the criteria of the International Classification
and Grading System for AMD. The mean change in all four parameters of visual
functions showed significant improvement in the treated group by the end of
the study period. In addition, in the treated group only 1 out of 48 cases
(2%) while in the placebo group 9 out of 53 (17%) showed clinically
significant (>2.0 dB) worsening in VFMD (p = 0.006, odds ratio: 10.93).
Decrease in drusen-covered area of treated eyes was also statistically
significant as compared to placebo when either the most affected eyes (p =
0.045) or the less affected eyes (p = 0.017) were considered. These findings
strongly suggested that an appropriate combination of compounds which affect
mitochondrial lipid metabolism, may improve and subsequently stabilize
visual functions, and it may also improve fundus alterations in patients
affected by early AMD.
PMID: 15947501 [PubMed - indexed for MEDLINE]
"Don W" <dwilgus from prodigy.net> wrote in message
news:5855eec2-216d-4e70-986d-4aeaf8d63d1c from p69g2000hsa.googlegroups.com...
>> Since I am at the AR end of ARMD I cannot comment too much on the
> Stargardt's problem. Except to say that I think your efforts are
> quite noble to help that 11 year old. I can only imagine the impact
> on the parents. Good luck with your efforts.
>> That small study on zinc and drusen appeared in Exp Eye Res 2007 Apr
> by Lengyel, as you probably know.
>> Oh, have not read (or heard of) the "reduction of total drusen" by
> the "folk wisdom" approach (blueblockers). The reduction part threw
> me. Where did you pick that up?
>> One side effect of this thread is it has given me a better heads up
> on the biophysics of the whole (hole??) darn problem. Thanks.
>> Don W.