LHON Knowledge Library

Bascom Palmer Eye Institute Announces Breakthrough for Degenerative Vision Disorder

http://bitly.com/JZUG9L

Hello my name is Brian Aston I lost my vision just over 7 years ago to this rare and crazy disease.  For the first 5 years I was not able to find much information on LHON and 2 years ago I found some more info and learned about Idebenone but there was nothing really to be that interested in.  I was playing video games on my 117” projector about 2 months ago and I got mad because I can never win at anything lol.  So I jumped on the computer and started researching again finding a lot more out there and just kept researching every day anywhere from 2-6 hours a day with my nose to the monitor reading at 5x magnification. I am probably one of the most motivated people on this planet to see again because of the good that I could do with the capability to do so.   For 2 months I have emerged myself into research on this Mitochondrial Disease and have compiled what I am calling the (LHON Knowledge Library.)  I will list as many of my research sources in an easy 1. 2. 3 manner.  I hope it helps you to understanding everything we can about this disease and the different things going on for research and the options we now have for a treatment and hopefully a potential cure in the near future!  So I would say that I have read and gone through about 90% of the material listed and have come up with my own conclusion for my path and am on the way now, I hope you can get something from this and find your path as well! DTC!

A chart of the different mutations and different facts.. Recovery %, % of affected, ect… Thanks Penny 🙂

http://www.mitomap.org/MITOMAP/MutationsLHON

So what is LHON and who does it affect? Sources for a general understanding of Lebers Hereditary Optic Neuropathy.

1. This site has a great deal of information on LHON and ways to connect and support research. As well the very best example of how a person with LHON actually sees.

www.LHON.org

2. This is the best detailed description of LHON and abundance of other valuable information.

http://www.ifond.org/lhon.php3

3. The Wikki page on Leber’s hereditary Optic Neuropathy.

http://en.wikipedia.org/wiki/Leber%27s_hereditary_optic_neuropathy

These are the actual body parts affected by the mutation.

1. Retinal Ganglion Cells.

http://en.wikipedia.org/wiki/Retinal_ganglion_cell

2. The Retinal Ganglion Cells Axonal Pathways.

http://en.wikipedia.org/wiki/Axon

3 The Optic Nerve.

http://www.tedmontgomery.com/the_eye/optcnrve.html

So now after going through all of the above material you probably have a pretty good Idea of most everything to do with the disease.  Now Ill give you the site that has more information than any other place on LHON. This is a list with links to research studies, papers that have been published, random websites for research, Dr Studies and much more! Up till now the most info in one place I found and I went through it lol.

http://www.ihop-net.org/UniPub/iHOP/bng/89835.html

So during all of this research I starting writing things down that I though were important to the body to have so the cells and body parts would be supplemented and hopefully function more properly. I created this with a lot of research and a little help from others “B’ So I started on a path to create the LHON Mito Cocktail.

LHON
Mito Cocktail:

By:
Brian Aston

Vitamin A    

http://en.wikipedia.org/wiki/Vitamin_A

Thiamine (B1)    

http://en.wikipedia.org/wiki/Vitamin_B1     

Riboflavin (B2)

http://en.wikipedia.org/wiki/Vitamin_B2

Niacin (B3)

http://en.wikipedia.org/wiki/Vitamin_B3

Pantothenic acid (B5)

http://en.wikipedia.org/wiki/Vitamin_B5

Pyridoxal (B6)

http://en.wikipedia.org/wiki/Vitamin_B6

Biotin (B7)

http://en.wikipedia.org/wiki/Vitamin_B7

Folic acid (B9)

http://en.wikipedia.org/wiki/Folic_acid

cobalamin (B12)

http://en.wikipedia.org/wiki/Vitamin_b12

Vitamin C (ascorbic acid)

http://en.wikipedia.org/wiki/Vitamin_c

Vitamin D

http://en.wikipedia.org/wiki/Vitamin_d

Vitamin E (α tocopherol)

http://en.wikipedia.org/wiki/Vitamin_e

Corral Calcium

http://en.wikipedia.org/wiki/Coral_calcium

Blue Green Algae

 http://en.wikipedia.org/wiki/Blue_Green_Algae

ubiquinone (Co Q10)

http://en.wikipedia.org/wiki/Coenzyme_Q10

IDEBENONE

http://en.wikipedia.org/wiki/Idebenone

ANTIOXIDANTS

Other
common ingredients in the “
Mito Cocktail” may include alpha-lipoic acid (another potent antioxidant), creatine, selenium or succinate.

 Super Oxide Dismutase

http://en.wikipedia.org/wiki/Super_oxide_dismutase

 Curcumin*

http://en.wikipedia.org/wiki/Curcumin

 DHEA

http://en.wikipedia.org/wiki/DHEA

 Enada (NADH, coenzyme 1)

http://en.wikipedia.org/wiki/Nicotinamide_adenine_dinucleotide

 Ginkgo biloba

http://en.wikipedia.org/wiki/Ginkgo_biloba

Now after studying Mito Cocktails more and consulting with a Naturopathic Physician that I hold in high regard, decided with an objective opinion that taking a serious amount of vitamins and doing therapies that could harm myself and spending over $1,000.00 dollars a month easily that most of the things on the list could be achieved from a healthy diet of balanced nutrition and adjusting your life style to be a healthier person. Ex. All the antioxidants listed can cost a ton of money each month but by using a product like NanoGreens10 or Green Rich I now get the supplemented nutrition of eating 5 servings of vegetables and 5 servings of Fruit every day, just mix the powder in a glass of water.   So If I were to take all of these pills every day with out a good diet to support the nutrition input then the only thing taking all those vitamins will do is, excuse the language but make you piss Very expensive and that’s mostly it. So I have decided that taking a good multi vitamin and a good general Antioxidant with Idebenone and a great diet is the path not a trillion pills a day, because it’s just a waste, in my opinion. I will continue the Vision Quest be sure to check back here at TheGeneticHouse.com for updates on what im doing and how it is all going on the “My Vision Quest” page!

Idebenone

1 this is a general description of Idebenone. Good info

http://internaf.org/ataxia/Idebenone_desc.html

2. Random web site to buy 180 mg Idebenone Good info

http://www.cognitivenutrition.com/en/idebenone-180-mg-60-caps.html

3. a lot of people who have Leber’s buy Idebenone from this website.

http://supplements.relentlessimprovement.com/categories.aspx?Keyword=idebenone

4. This is a study on a Prescription of Idebenone called Catena from Santhera Pharmaceuticals. The subjects in this study took a 900mg a day dose for 6 months. And I think the results are amazing!

Santhera’s Catena Improved Vision in Patients with Leber’s  Hereditary Optic Neuropathy; Regulatory Submissions Planned in First Half of 2011

http://www.drugs.com/clinical_trials/santhera-pharmaceuticals-holding-ag-ch-santhera-s-catena-improved-vision-patients-leber-s-9633.html

5. This page helps us to understand why and how Idebenone helps people with LHON.
http://www.santhera.com/index.php?docid=212&vid&lang=en&newsdate=201104&newsid=1503082&newslang=en

6. This is the medical journal that explains the research for the above link.

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017963

7. Another site to order Idebenone, recommended to me.

http://www.vitadigest.com/primaforce-idebenone-80.html

Gene Therapy

The Bascom Palmer Eye Institute in MiamiFLis working on a real CURE for this horrible disease that has taken the ability for people like my self to live a normal fulfilling life. They are taking some of the affected cells and putting them in a petered dish with a compound called ND4 and energizing the cells creating a ATP powerhouse cell and then going to put it back into the affected and then hopefully the new supercharged cells will take over and push out the mutated mitochondria and help the body to create new healthy cells. Thus rendering the person Sighted!! Hopefully. This is my understanding of the study and I am on my way to Miami soon to join this study!! The study is unfortunately only for people who have the G11778a mutation, lucky for me that is the one I have and has been documented. The 11778 mutation accounts for about 80% of people who are affected by this mitochondrial disease even though there are many different mutations with-in the disease.

1. There is a lot of info on the study on this page.

http://bascompalmer.org/site/disease/disease_neuro_LHON.asp#LHON

2. Preliminary Study Finds LHON Presents Promising Target
for Mitochondrial Gene Therapy
http://journals.lww.com/neurotodayonline/Fulltext/2002/12000/Preliminary_Study_Finds_Lhon_Presents_Promising.7.aspx

3. Bascom Palmer Eye Institute Researcher Receives NEI Grant for Gene Therapy Trial

http://bascompalmer.org/site/news/news_template.asp?press_id=1103&print=yes

4. Leber’s
Hereditary Optic Neuropathy-Gene Therapy: From Bench top to Bedside

http://www.hindawi.com/journals/jop/2011/179412/

So as you can see just from the sources for research and information I have listed here that there is a LOT of info out there to be gone trough. I hope that this LHON Knowledge Library has helped you and given you the excitement to go out and do your own research and come to your own conclusions, at the end of your time spent learning about this crazy disease hopefully you to will have a plan to start action on. I have my plan to work on getting as much of my sight back as I can because I know that life would be much different if I was on the same level playing field as others!

3 thoughts on “LHON Knowledge Library

    1. Christy Aston Post author

      Thank you so much for the link. This is a great explanation of the Gene Therapy Study in Miami that Brian is a part of, can’t wait till it’s approved!

      Reply
  1. Pamala Wells

    Glad you weren’t winning your game (lol) because it motivated you to post this which I found just now so thank you Brian. My nephew was recently diagnosed with LHON and trying to find info and understanding it for me is a challenge . so with him just being diagnosed he hasn’t gotten the accessibility tools and training yet so he relies on us, (his family) to be his eyes in gathering useful information so again ,THANK YOU

    Reply

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