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.

@prayingtolucy

Hello,
I'm so glad you responded. It's hard to find people to talk to about it.
I'm guessing you were diagnosed with intermediate Macular Degeneration? Does your doctor recommended AREDS2 vitamins, uv/uvb sunglasses, leafy greens, and the amsler grid? That's where I am right now. No wavy lines or blurriness. I pray every day it remains this way forever lol. And dry.
How old are you?

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I am 84 and the macular problems began only a couple of years ago. I have been very much on top of things because my mother went blind from MD and I wish to avoid that. My ophthalmologists does not recommend any treatment or dietary considerations. The 4 or more injections per year work beautifully. I have a number of friends (both older and younger) that go to this same Retinal Clinic and we are all happy, healthy and moving forward.

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@prayingtolucy

I'm sorry, but what is your background? Everything you've written contradicts all of the research I've done and every specialist I have seen including The Wilmer Institute at Johns Hopkins University.
There is a genetic factor in my family. My father had this disease but wasn't diagnosed until he was 83 and with technology and research being nowhere close to where it is today there's no telling when his developed. I didn't know anything about it until recently. My dad passed in 2021 at 90. My aunt, his sister, also has it. I'm the 7th of 8 kids and so far the only one with drusen.
I do a whole lot more than just take AREDS2 vitamins. I also eat lots of fresh fruits and vegetables, leafy greens, nuts and seeds (chia, flax, pepita's, sunflower) fresh fish, Omega 3, on a daily basis I eat a mixture of these things. Plus add pure Acai and Aronia berry powder in my fresh fruit smoothies with almond milk that I drink for breakfast. I intermittently fast as well and I get daily exercise. I also take turmeric pills, vitamin c pills and a multivitamin every day. I'm in good health and s good weight. Plus I protect my eyes and skin from the harmful rays of the sun. I'm taking this very seriously. My specialist told me to eat for my eyes as I would for my heart. There is a close correlation.
I have conversations with a lady who works with Brightfocus, one of the research agencies for this disease, and she told me, don't quote me, but she said something along the lines of many people lose their vision because they do not take their diagnosis seriously.
I have met so many people through this support group who have been diagnosed in their 50's and older and their doing just fine. Some have advanced and are getting shots, some have had it for 15 years and haven't advanced. We're all different. I met a lady who told me her dad had wet AMD at 63, that means he must have been in his 50's at onset. He's been getting injections for 18 years and still drives, reads, watches TV, recognizes people. He was an avid golfer, never wore sunglasses, still smokes here and there. I've read so many stories on this support group. When I read stories about someone who was diagnosed with wet or didn't know they had it until they say straight lines wavy, that makes me think they didn't get regular eye check ups.or they didn't take it seriously and blew it off.
This is an "Age" related disease. It's considered young to be diagnosed in your 50s but not unheard of, and it doesn't progress as quickly as it would for someone in their 70s & older it usually worsens as you age (JHU).
I hopeful a better, less invasive treatment will come along before I'm that age, or maybe a cure, or stem cell therapy. As a matter, it's also possible to never progress at all.
All I can do is continue praying and staying positive.
As far as testing, I'm not interested in going that route. I would also think it would have been recommended and it hasn't. I believe I have a good grip on things right now.
I'll be seeing my retina specialist on March 11th, I'll make sure to let him read your message so I can get his feedback on it. I also keep a list of questions that I take to my visits.
We've come a long way with treatments and research even over the past few years. I'm staying positive through this.
Someone told me recently, "This is not a death blind sentence". I believe that.
Had I read your message a few months ago if probably be very upset right now and thinking of ways to take myself out so I never have to live in a world of darkness but I have done a ton of research and I have been seen by excellent retina specialists and believe I have a great team of doctors now. I feel good.
You never mentioned if you have Macular Degeneration or if you're getting genetic testing to if you are a candidate. Do you have it? Which stage? How old are you? And how long have you had it?
I hope to continue this chat. TTYS

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I dont know all the particulars of my macular problems (I leave that to the doctor) but I am concerned because my mother went blind from macular degeneration (the was my Aunt's identical twin) but my Aunt did not have macular problems. It is an interesting world and the curiosities of genetics baffles the mind

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@marthadean

I dont know all the particulars of my macular problems (I leave that to the doctor) but I am concerned because my mother went blind from macular degeneration (the was my Aunt's identical twin) but my Aunt did not have macular problems. It is an interesting world and the curiosities of genetics baffles the mind

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They most likely didn't have all of the knowledge, research, and treatments, or even better treatments on the horizon back when your mom had it. How long ago was it that your mom was diagnosed before being blind? Was her peripheral vision good? Was your mom ever a smoker? Not judging just curious.
How long have you had Macular Degeneration? How old were you and how old are you now?
Are you taking AREDS vitamins, if you are but no shots then you're most likely intermediate.
Genetics are a mystery. My dad was diagnosed in 2015, I had no clue. I'll be getting his records on Monday so I can the notes. I'm sure my father was never informed of the importance of following up etc. I only know what I know from my own research and asking questions. Otherwise I left the office not knowing or being informed of a damn thing. I'll be getting my records as well since I saw my opthalmologist annually and have no clue when I even had early stage. I do believe now, thinking back on my dad that he was probably centrally blind but functioned so well. His sister has it as well. I just learned that within the last year.
I pray every day that I remain stable and that I'm you g enough to benefit from some the treatments coming with stem cells and genetic reversal (I think that's what it is called).
I have a lot of life ahead of me to live and I want to see it crystal clear.
Stay healthy, at a good weight, eat well AND try to stay away from stress. I was told to treat it like I would my heart. There's a connection. Talk to you soon. 😊

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@marthadean

I am 84 and the macular problems began only a couple of years ago. I have been very much on top of things because my mother went blind from MD and I wish to avoid that. My ophthalmologists does not recommend any treatment or dietary considerations. The 4 or more injections per year work beautifully. I have a number of friends (both older and younger) that go to this same Retinal Clinic and we are all happy, healthy and moving forward.

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Hello, I'm happy everything is working out for you!
Were you diagnosed initially with wet AMD? You started shots right away?
You know people young and older with this despicable disease? How young?
I have never even heard of this or known anyone with it until two almost three years ago. I learned of my father having it this year. My dad passed in 2021. I have one friend in England that I chat with who has it and she has a lot of health problems.
Were you or your mom smokers? A doctor told my sister that because she hasn't smoked since she was 18 that she'll never get it. Even tho our father had it, our aunt, and now me, her sister has it. There's something wrong for a doctor to predict that. My specialist told me that's not necessarily true. Sorry for rambling. Talk soon okay.

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Additionally, Mayo Clinic's Center for Individualized Medicine offers genomic testing services that can aid in diagnosing and treating conditions like AMD. By analyzing a patient's DNA, healthcare experts can identify genetic factors contributing to the disease and tailor treatments accordingly.

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@sjs1

Additionally, Mayo Clinic's Center for Individualized Medicine offers genomic testing services that can aid in diagnosing and treating conditions like AMD. By analyzing a patient's DNA, healthcare experts can identify genetic factors contributing to the disease and tailor treatments accordingly.

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I'm not close to a mayo clinic. I'm also not sure what else they can tell me. Like I mentioned before I now know my father had AMD and my aunt, his sister, had it.
Honestly, I'm a little afraid of what else they may find.

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@prayingtolucy

I'm not close to a mayo clinic. I'm also not sure what else they can tell me. Like I mentioned before I now know my father had AMD and my aunt, his sister, had it.
Honestly, I'm a little afraid of what else they may find.

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His sister has it... She is still alive, 89 with wet in one eye and getting injections.

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@sjs1

I would be interested to know how many females are diagnosed with AMD are also on HRT. My MD wants me to take it for the first time at age 75 because of my intermediate dry AMD condition. He says
that estrogen is protective and surely I would not have this condition if I had been on HRT. He is a MD who just practices preventive medicine. He is not a retina doctor. He says it will help with the progression. I haven’t taken it so far because my other MDs take the conventional route. It is not conventionally advised to take low dose estrogen at 75. I think it’s important to know how to ask ChatGPT questions about the supplements other than ARED2 that are helpful. All the retina specialists are just going to give you the routine or conventional take: Take AREDS2 and wait, look at the amsler chart. I found out from “23 and me “ that I have the worst prognosis, thecdouble Y402H alleles in the CFH family from both parents but my AMD did not start in the fifties. My CFH DNA with these mutated alleles have the worst prognosis. I use the off label longevity drug rapa or sirolimus very low dose 5 mg with a MD’s prescription and supervision. It has been 8 to 10 years now still diagnosed with AMD and it’s at the intermediate dry. I use a low vision optometrist for driving glasses. I take more supplements than conventionally advised by a retina soecialist like Mitq foreyes, NMN, NAC, Melatonin etc all found from reading articles on intermediate dry AMD research and from the advice from a science website Admin who also has dry intermediate I haven't been to Wills, Wilmer or Duke, the top eye hospitals near me but I will visit each to introduce myself so tha when the clinical stems cell trials are more frequently conducted I might be considered given my DNA mutations. chstGPT gave me the names of the intermediate dry AMD studies currently underway and the MDs there who are the principle intermediate dry AMD researchers. I use the eyecharger device, a red led 670 hz flashlight used in the mornings for 3 min each eye to stimulate the mitochondria of which ChatGPT approves and this device is the result of the research if Dr Jeffrey at Univ of London neuroscience dept. Of course my retina doctor had never heard of eyecharger although photo modulation is now being researched and may be implemented in clinical settings for intermediate dry AMD. AMD is a disease of mitochondrial dysfunction. Most with AMD disease (like 50 percent) will have a DNA mutation component which causes mitochondrial dysfunction and disruption to the eye’s immune system in those who environmental factors are also present like having being a smoker —but hopefully not the worst scenario like mine. Research ChatGPT found research articles that report that my DNA mutations quickly progress to geographic atrophy. It’s very important to take AREDS2 and see a retina doctor 2x a year. There are subscription devices you can use that are a home monitoring device. You look into them daily and it reports back to monitoring station to gauge if your eyes have changed for the worse. I looked into it - didn't like the bureaucratic management. At my age and for the long time I have been in the intermediate stage I can’t just “wait and see “ for just the FDA approved modalities like those who can who are diagnosed in their fifties,

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I am going to reply to everything soon. I do want to ask where you live, state? I've been to the John's Hopkins Wilmer eye institute last August. It is the opthalmologists there who told me I have decades before this will affect me. Now, my 2nd retina specialist says the same thing. I live in Maryland just outside of Baltimore. I would love to visit the Bascom Palmer Eye Institute in Miami Florida. I'm trying to work it out.
Also, the Photobiomodulation (red light therapy) was FDA approved in November 2024. My specialist is not getting a machine but he thinks Hopkins may. He says the results are not plentiful, for a lack of another word, for him to invest in at this time.
Also, were you ever diagnosed with early Macular Degeneration or have you only known for the 10 years of intermediate MD?

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@sjs1

I would be interested to know how many females are diagnosed with AMD are also on HRT. My MD wants me to take it for the first time at age 75 because of my intermediate dry AMD condition. He says
that estrogen is protective and surely I would not have this condition if I had been on HRT. He is a MD who just practices preventive medicine. He is not a retina doctor. He says it will help with the progression. I haven’t taken it so far because my other MDs take the conventional route. It is not conventionally advised to take low dose estrogen at 75. I think it’s important to know how to ask ChatGPT questions about the supplements other than ARED2 that are helpful. All the retina specialists are just going to give you the routine or conventional take: Take AREDS2 and wait, look at the amsler chart. I found out from “23 and me “ that I have the worst prognosis, thecdouble Y402H alleles in the CFH family from both parents but my AMD did not start in the fifties. My CFH DNA with these mutated alleles have the worst prognosis. I use the off label longevity drug rapa or sirolimus very low dose 5 mg with a MD’s prescription and supervision. It has been 8 to 10 years now still diagnosed with AMD and it’s at the intermediate dry. I use a low vision optometrist for driving glasses. I take more supplements than conventionally advised by a retina soecialist like Mitq foreyes, NMN, NAC, Melatonin etc all found from reading articles on intermediate dry AMD research and from the advice from a science website Admin who also has dry intermediate I haven't been to Wills, Wilmer or Duke, the top eye hospitals near me but I will visit each to introduce myself so tha when the clinical stems cell trials are more frequently conducted I might be considered given my DNA mutations. chstGPT gave me the names of the intermediate dry AMD studies currently underway and the MDs there who are the principle intermediate dry AMD researchers. I use the eyecharger device, a red led 670 hz flashlight used in the mornings for 3 min each eye to stimulate the mitochondria of which ChatGPT approves and this device is the result of the research if Dr Jeffrey at Univ of London neuroscience dept. Of course my retina doctor had never heard of eyecharger although photo modulation is now being researched and may be implemented in clinical settings for intermediate dry AMD. AMD is a disease of mitochondrial dysfunction. Most with AMD disease (like 50 percent) will have a DNA mutation component which causes mitochondrial dysfunction and disruption to the eye’s immune system in those who environmental factors are also present like having being a smoker —but hopefully not the worst scenario like mine. Research ChatGPT found research articles that report that my DNA mutations quickly progress to geographic atrophy. It’s very important to take AREDS2 and see a retina doctor 2x a year. There are subscription devices you can use that are a home monitoring device. You look into them daily and it reports back to monitoring station to gauge if your eyes have changed for the worse. I looked into it - didn't like the bureaucratic management. At my age and for the long time I have been in the intermediate stage I can’t just “wait and see “ for just the FDA approved modalities like those who can who are diagnosed in their fifties,

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Also, I was reading about eye drops that may replace injections. My retina specialist has heard of them. I hope I remain mild, intermediate, and dry forever. Or at least long enough to benefit from some of the newer treatments headed our way.

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@prayingtolucy

I am going to reply to everything soon. I do want to ask where you live, state? I've been to the John's Hopkins Wilmer eye institute last August. It is the opthalmologists there who told me I have decades before this will affect me. Now, my 2nd retina specialist says the same thing. I live in Maryland just outside of Baltimore. I would love to visit the Bascom Palmer Eye Institute in Miami Florida. I'm trying to work it out.
Also, the Photobiomodulation (red light therapy) was FDA approved in November 2024. My specialist is not getting a machine but he thinks Hopkins may. He says the results are not plentiful, for a lack of another word, for him to invest in at this time.
Also, were you ever diagnosed with early Macular Degeneration or have you only known for the 10 years of intermediate MD?

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One advanced alternative is the ForeseeHome device by Notal Vision. This FDA-approved home monitoring system employs preferential hyperacuity perimetry to detect subtle visual changes indicative of conversion from dry to neovascular AMD. Clinical studies have demonstrated its efficacy; for instance, the AREDS2-HOME study reported that 94% of patients using ForeseeHome who developed neovascular AMD maintained visual acuity of 20/60 or better at the time of conversion, compared to 62% with standard monitoring.
REVIEWOFPRESBYOPIA.COM

However, real-world application of ForeseeHome has revealed challenges. A retrospective analysis indicated that while 83.7% of prescribed eyes used the device at least once, 26.3% couldn't establish a baseline measurement necessary for effective monitoring. Additionally, patient compliance decreased over time, with 24.7% discontinuing use within the first year.
PMC.NCBI.NLM.NIH.GOV

For those seeking more accessible options, smartphone-based applications like Alleye offer promise. Alleye uses an alignment hyperacuity task to detect early visual function changes and has been validated in clinical trials. It allows patients to monitor their condition conveniently, though it requires consistent self-administration and may not be suitable for all individuals.
REVIEWOFPRESBYOPIA.COM

In summary, while tools like the Amsler grid are widely used, devices such as ForeseeHome and apps like Alleye provide more sensitive and reliable methods for early detection of AMD progression. It's essential to consider factors like ease of use, patient compliance, and accessibility when selecting a monitoring method. Consulting with an eye care professional can help determine the most appropriate option based on individual needs and circumstances.

Glad to hear your prognosis is good. I cant imagine they could give you solace without knowing your genetic mutations IF ANY that could contribute to your early diagnosis of AMD in your fifties. This Alleye looks interesting, already tried years ago to interact with the Foresee people and came away with it just wasn't worth it.
Look at the Jan 2025 Jama article ( it’s not paywalled ) on photo modulation in a clinical setting. it, they were not impressed.

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