Blind and Visually Impaired Community
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Some advice regarding the LHON treatment (self.Blind)
submitted by GGGGG540lk
Hi everyone!
I'm an affected LHON patient and I just wanted to share some information which some people might overlook in connection with the idebenone treatment. I don't know if I can help with this post to anyone but it worths a try.
Firstly I would like to point out that you must take in the pills during the meal because it can boost the effect. There are also certain vitamins you should be taking such as riboflavin(vitamin B2) and vutamin C.
You also musn't drink alcohol, smoke or do drugs. These can be triggers to this disease.
I know that a lot depends on the type of mutation as well but these are some general advices I wanted to share.
I'm an affected LHON patient and I just wanted to share some information which some people might overlook in connection with the idebenone treatment. I don't know if I can help with this post to anyone but it worths a try.
Firstly I would like to point out that you must take in the pills during the meal because it can boost the effect. There are also certain vitamins you should be taking such as riboflavin(vitamin B2) and vutamin C.
You also musn't drink alcohol, smoke or do drugs. These can be triggers to this disease.
I know that a lot depends on the type of mutation as well but these are some general advices I wanted to share.
Badassmotherfuckerer 3 points 1y ago
I am an LHON affected person as well. I don’t see too many of us around here. I’m not too up-to-date on the current research literature, but I’ve heard of this idebenone treatment. And have a lot of questions.
Are you taking it currently? How long? Are there any results? What’s the general consensus on this from what you understand of the science?
Are you taking it currently? How long? Are there any results? What’s the general consensus on this from what you understand of the science?
GGGGG540lk [OP] 2 points 11m ago
Did you notice my messages?
GGGGG540lk [OP] 1 points 1y ago
I sent DM to you. Check out the chat request
Chrismitchdip 2 points 11m ago
Any updates on the idebone treatment
Chrismitchdip 2 points 11m ago
Both. I was recently diagnosed with Lebers and my vision is fucked in my right eye but the disease for some reason isn't affecting my left eye. So I'm trying everything
GGGGG540lk [OP] 1 points 11m ago
You mean in my own case or in general?
VlueMars 1 points 7m ago
Hi! How much mg of idebenone do you take?
GGGGG540lk [OP] 1 points 7m ago
900 mg/day
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