Anyone have intermediate Macular Degeneration

Posted by prayingtolucy @prayingtolucy, Feb 12 6:44pm

Hello,
I'm interested in hearing people IMD.
I like reading people's stories, how they deal with it, what they are experiencing and if they've learned of new treatments or cures coming down the pike.
I pray every day that I can grow old while maintaining my good central vision. I pray that I am young enough to one day benefit from more permanent treatments, less invasive treatments, and even a cure. Research has been ongoing for such a long time that sometimes I think there may never be a cure. I will not give up nor will I stop praying.
I hope we can get a chat going here. ❤️

Interested in more discussions like this? Go to the Eye Conditions Support Group.

@prayingtolucy2

I'm confused. If GA progression on average occurs within 5-8 years And you have double y402h which causes a quick progression to blindness .. You're already 10 years in, intermediate stage, And still have good vision. How's that?

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I have mountains of drusen ready to flatten and take out my retina and it’s just a matter of time. Maybe because of the longevity drug rapamyacin I have been taking. In 2022 I was seen by so many doctors and I was in pain but now since I have taken rapa for two years I have no old age pain. When they did the AMD and rapa shots study they shot a ton of rapa into an advanced stage GA AMD eye. They found VeG was better. Rapa must be pulsed in low dosages to stop inflammation. My CFH gene mutation means that I cant regulate inflammation. Whereas the ARMS gene mutation means a mitochondria malfunction. Two separate biochemical pathways. Very different mechanisms. Rapa is not an immune suspression drug at a low once a week 5 mg dosage it actually improves it! See Peter Attia’s you tube podcast on it . David Sinclair the Harvard pioneer in disvovery of sirtuins takes a low dose. Rapa only delays progression like AREDS2. Many with double APOE4 gene take rapa to delay progression to dementia. I use a preventive medicine doctor and the cost is 1000 a year for the 2 appts and meds by prescription its a triangular pill from greenstone . “rapamune “. Do not use insurance only good rx. It will not cure the disease only delay progression.

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@prayingtolucy2

I'm confused. If GA progression on average occurs within 5-8 years And you have double y402h which causes a quick progression to blindness .. You're already 10 years in, intermediate stage, And still have good vision. How's that?

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Also found a 2015 areds study which is in conflict with the 3 journal papers articdx emailed me. That must be why genetics isnt tested. The studies are conflicting and all over the place. I’m still taking no zinc AREDS from now on, I think articdx wants to sell you the AMD supplements for your genetics!

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@prayingtolucy2

I'm confused. If GA progression on average occurs within 5-8 years And you have double y402h which causes a quick progression to blindness .. You're already 10 years in, intermediate stage, And still have good vision. How's that?

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https://www.sciencedirect.com/science/article/abs/pii/S0014483521002669
only animal and dead human eyes studies for the elderly what chances I live past 90, my mother and grand mother didn’t . So in my situation it is rational to take it under MD supervision.

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So in 2022 I saw an ortho doc for osethoarthtis, a spine doc for spinal stenosis and a rhematogist for gout. I have no inflammatory conditions since taking rapa. I haven’t had any colds, etc , certainly never got covid.

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Where can I get the rapa and for how much? It's script from preventive medicine doctor, right?

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I have an appointment at UMMC this Friday, February 28th for a 3rd opinion so I can finally know the truth about my eye disease.

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Until diagnosis, I've not been on type of regime for anything AND I also have never had COVID and have never nor will I ever get the jab. The only thing I've done is eat well and walk.

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@prayingtolucy2

I'm confused. If GA progression on average occurs within 5-8 years And you have double y402h which causes a quick progression to blindness .. You're already 10 years in, intermediate stage, And still have good vision. How's that?

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Where I got it wrong is not taking HRT after menopause. It is protective. You look younger and feel better. Earlier studies were flawed concerning increase chances cancer? I don’t know. My preventive MD wants me to go on it at 75! Now they talk about how protective it is for your heart. When hormones disappear that’s is the beginning of old age and it’s diseases. My sister with blue eyes 66 is on it and her eyes show no disease. I just didn’t have any menopausal symptoms so I never considered it. .
https://pmc.ncbi.nlm.nih.gov/articles/PMC8949880/

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I went through menopause naturally and in my 40s. I didn't even know with the exception of cessation of my menstrual cycle. And I've taken tests to see if I should be on anything and for signs of osteoporosis. All negative. I have been researching in hopes of understanding if this has anything to do with my macular degeneration. It kinda makes sense.
My cousin who is also my age went through menopause the same time/age I did, but heavier, with some health issues and a heavy smoker has great vision other than for reading.

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@prayingtolucy2

I went through menopause naturally and in my 40s. I didn't even know with the exception of cessation of my menstrual cycle. And I've taken tests to see if I should be on anything and for signs of osteoporosis. All negative. I have been researching in hopes of understanding if this has anything to do with my macular degeneration. It kinda makes sense.
My cousin who is also my age went through menopause the same time/age I did, but heavier, with some health issues and a heavy smoker has great vision other than for reading.

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Also, I asked my primary care doctor about low dose HRT. She said they really don't prescribe that anymore BUT it is making a comeback. She would have to refer me to a gynocologist because they are the only ones who can prescribe it. I may look for one to have a consult with. Luckily, I have open choice PPO Insurance and do not require referrals.

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