A Friend Has Leber's Hereditary Optic Neuropathy

TreasureVibe

Member
Joined
Jul 3, 2016
Messages
1,941
Hi there everyone. A friend of mine has Leber's hereditary optic neuropathy, a very rare disease. He became blind in both eyes. It has to do with the mitochondria.. Perhaps does anyone have suggestions as to what could help him? Niacinamide for the mitochondria? I will contact Dr. Peat too to see if he has anything for it.

Thanks!

CC @haidut
 

haidut

Member
Forum Supporter
Joined
Mar 18, 2013
Messages
19,798
Location
USA / Europe
Hi there everyone. A friend of mine has Leber's hereditary optic neuropathy, a very rare disease. He became blind in both eyes. It has to do with the mitochondria.. Perhaps does anyone have suggestions as to what could help him? Niacinamide for the mitochondria? I will contact Dr. Peat too to see if he has anything for it.

Thanks!

CC @haidut

Anything involving neuropathy is usually helped by progesterone and other neurosteroids. Methylene blue, niacinamide, aspirin, and vitamin K are other pro-mitochondrial substances that have shown promise in nerve disorders, including vision neuropathies.
 
OP
T

TreasureVibe

Member
Joined
Jul 3, 2016
Messages
1,941
Anything involving neuropathy is usually helped by progesterone and other neurosteroids. Methylene blue, niacinamide, aspirin, and vitamin K are other pro-mitochondrial substances that have shown promise in nerve disorders, including vision neuropathies.
What are other neurosteroids beside progesterone? And where can one buy methylene blue?
 

haidut

Member
Forum Supporter
Joined
Mar 18, 2013
Messages
19,798
Location
USA / Europe
OP
T

TreasureVibe

Member
Joined
Jul 3, 2016
Messages
1,941
A quick Google search would have answered it for you:
List of neurosteroids - Wikipedia
Thanks, but that's a whole bunch of them, I guess steering clear of the synthetic ones is the way to go right? And in this guy's case, it's a mtDNA defect.. So would the pro-mitochondrial substances work in that case as well or do we need something more specific here? I mean you can always try to jumpstart the mitochondria and I will definitely recommend these suggestions to him, but I don't want to dissapoint him if it wouldn't help his blindness, due to the fact that it's a genetic defect which makes the mitochondria susceptible to damage/dysfunctional.

Also see this:

Quinone analogues can have a detrimental effect on certain mitochondrial parameters when tested in vitro.

Evaluating the therapeutic potential of idebenone and related quinone analogues in Leber hereditary optic neuropathy - ScienceDirect

So I'm kind of wary here, if things would be made worse in his vision then it's better not to try anything at all..

Here's an animation showing exactly what LHON is. The promoted drug, Idebenone, which is a lab-made quinone, did not work anymore for my friend:



Doing some research I found that some people regained alot of vision through diet and certain natural therapies..

Idebenone is a synthetic analog of CoQ10 apparently: Idebenone - Wikipedia
 
Last edited:

haidut

Member
Forum Supporter
Joined
Mar 18, 2013
Messages
19,798
Location
USA / Europe
Thanks, but that's a whole bunch of them, I guess steering clear of the synthetic ones is the way to go right? And in this guy's case, it's a mtDNA defect.. So would the pro-mitochondrial substances work in that case as well or do we need something more specific here? I mean you can always try to jumpstart the mitochondria and I will definitely recommend these suggestions to him, but I don't want to dissapoint him if it wouldn't help his blindness, due to the fact that it's a genetic defect which makes the mitochondria susceptible to damage/dysfunctional.

Also see this:

Quinone analogues can have a detrimental effect on certain mitochondrial parameters when tested in vitro.

Evaluating the therapeutic potential of idebenone and related quinone analogues in Leber hereditary optic neuropathy - ScienceDirect

So I'm kind of wary here, if things would be made worse in his vision then it's better not to try anything at all..

Here's an animation showing exactly what LHON is. The promoted drug, Idebenone, which is a lab-made quinone, did not work anymore for my friend:



Doing some research I found that some people regained alot of vision through diet and certain natural therapies..

Idebenone is a synthetic analog of CoQ10 apparently: Idebenone - Wikipedia


I mentioned the chemicals that I think could help. From the neurosteroids, the progestins like progesterone, allopregannolone, 5a-DHP, and androgens are probably the ones most likely to help. Idebenone is not a very safe chemical, vitamin K is much better both in terms of effects and safety. Same with methylene blue.
 
OP
T

TreasureVibe

Member
Joined
Jul 3, 2016
Messages
1,941
I mentioned the chemicals that I think could help. From the neurosteroids, the progestins like progesterone, allopregannolone, 5a-DHP, and androgens are probably the ones most likely to help. Idebenone is not a very safe chemical, vitamin K is much better both in terms of effects and safety. Same with methylene blue.
Wow sweet dude. There's a study showing adverse effects of MB though, are you certain that it is safe? Study: Adverse Effects of Methylene Blue on the Central Nervous System | Anesthesiology | ASA Publications

Just checking, you also didn't mention niacinamide in your last post, is there a reason for this? Would niacinamide be useful?

And specifically which form of vitamin K would be the best? MK-4?

Also what would you make out of this? They seemingly connect the major male prevalence of LHON to the success of in vitro ameloriation of ROS by estrogen: Oestrogens ameliorate mitochondrial dysfunction in Leber’s hereditary optic neuropathy
 
Last edited:

Similar threads

Back
Top Bottom