Sue
#1
I am taking rapamyacin to prevent blindness from macular degeneration. I am taking it from a US source and with a doctor’s prescription. I am taking 5mg weekly. I have had the condition for eight years now and my vision is poor when I am driving to see road signs. I am 74. My retina doctor didn’t respond when I told him. I don’t have a medical background. I just read a NiH study and I am really just grasping for some remedy to save my eyesight. It’s at the intermediate stage.
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Tim
#2
@Sue
There is in fact some encouraging evidence that Rapamycin, NAC, NMN, and PQQ have potential in the treatment of AMD. It may be worth taking all four of the supplements, since each one elicits a different response. I have a moderate case that has remained stable for the last year, but neither I nor my retina specialist know exactly why.
5 Likes
Tim
#5
@Sue
This is a useful paper too. Most of us here already take melatonin for sleep or to boost immunity, so it’s a bonus if it can also prevent or retard the progression of AMD. Good luck to you, sir.
2 Likes
Tim
#6
@Sue
Regarding the ScienceDirect paper, the subjects who had worse acuity after the Rapa trial may have experienced the unfortunate but inevitable progression of the disease over the course of a year, an outcome that may have had nothing to do with Rapa. In addition, those subjects whose vision declined had the wet version of macula, a category that excludes you and me. Thanks, though, for posting the paper, which I found to be eminently readable.
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Sue
#7
I have added to my dry intermediate AMD protocol the Eye charger, a red light flashlight 670 LED, a device used in Glen Jeffrey’s AMD research at Univ of London.Used in the morning once a week for 3 min in each eye. Helps mitochondria energy production. Increases ATP levels. $89.00
www eyecharger.com.au
3 Likes
Tim
#8
I used to be in the laser business. I can’t tell you how many times I caught a red laser beam in my eye. I’m lucky I didn’t do lasting damage.
Has your vision improved since last February?
Sue
#9
It’s never going to
improve, once gone.
Just maintained with hope no progression.
Sue
#11
I have red LED blanket I bought 25 years ago. I have the book that came with it “Healing Energies. of Heat and Light” by Charles T McGee MD. It’s probably out of print. This blanket has different frequencies for eye injuries or eye corneal ulcers or other tissues or diseases. I only let it cycle through all the modes. I don’t put it over the thyroid. I am fascinated by the old herbal healers like John Christopher but remedies for AMD specifically
weren’t in his book.
1 Like
Sue
#12
I also added saffron and tuermic/ curcumin and the NAC I now take is ethyl ester.
It seems like there is evidence in favor of lutein, zeaxanthin and astaxanthin wrt. macular degeneration. Curious to see if rapa interacts with these when it comes to AMD.
3 Likes
I think that unfortunately may well be true, but there is no reason to believe that should necessarily be the case. It is cliche at this point, but Yamanaka factors, which as a matter of fact definitely do reverse epigenetic aging, have been shown to reverse vision loss. Here is an article on the findings of the Sinclair team in 2020:
Last year, David Sinclair even mentioned the idea of applying to the FDA to do Yamanaka Factor trials for blindness in humans.
https://www.science.org/content/article/two-research-teams-reverse-signs-aging-mice
It is a bit unfortunate how long it will probably take to see them actually be accessible to the masses, but I think that it is very likely a real existing solution for reversing blindness… waiting behind decades of red tape.
3 Likes
Tim
#15
Is it stable or deteriorating?
Mine is stable, more or less. I take Areds 2, one pill a day.
1 Like
Sue
#16
Journal article: Study with bascom palmer
My driving is somewhat impaired. I have 2 copies of the CFH gene from each parent at Y402H. I can’t make sense of this article- it’s over my head but my variant is listed. My DNA report is from 23 and me. Apparently the gene variant plays a role in progression. All I remember is my Mother ‘s condition went to wet AMD and she had the eyeball shots but never had the center blindness but she could not drive.
Tim
#17
Yeah, but could she read? I bought new Rx glasses, but my reading is blurry. The old Rx works better. I hope my vision doesn’t get worse. Audiobooks are great, but I do a lot of online reading.
Did 23 & Me tell you that you had the CHF gene? They didn’t tell me. Maybe I should look more closely at a recent download. Anyway, CHF can cause the vessels in the retina to atrophy or grow abnormally, neither good.
Sue
#18
23andme gave the gene and variant. I’m seeing a low vision optometrist soon. The exam is longer than the normal vision exams. I have no good trifocal progressive lenses RX.I tried 3 different optometrists. The last 2 said just use readers. So I use 350 readers. I dont like sunglasses i need the light to see. Switched from LED to incandescent to read by. No problem reading on iphone. Yes, Mother probably needed better specs to drive with. So do I .
I know I have some normal old age vision loss as well that can be corrected. Of course cataracts were fixed - really weren’t bad. Hoping I can pass the future driving tests.
Sue
#19
It’s important to see a retina or just an eye doctor every 6 months. If you can’t see out of new glasses take them back for new exam and new lenses. Costco let me and most eye shops too. I don’t know whether its the AMD or the exam. When I see the low vision opt and get new glasses I’ll follow up here with my eval.
1 Like
Tim
#20
I just received a reminder from my retina specialist for my appointment next week.
I like trifocal progressives, at least in theory. But my latest pair, bought online, needs to be tweaked.
That paper came to no strong conclusions about the CHF variant most responsible for progression. It said that diet and smoking history were equally important.
1 Like
Sue
#21
Doxycycline and rapamyacin both low dose oral complements used together is suggested where one fights inflammation and the other cell Autophagy Haven’t tried this. Has anyone?
Doxycycline-Mediated Inhibition of Choroidal Neovascularization
Conclusions. : Doxycycline effectively hampered the progression of experimental CNV. The results suggest that orally administrated doxycycline can reach the choroid to attenuate proteolytic enzymes that remodel Bruch’s membrane and promote the antiangiogenic PEDF to inhibit neovascularization.
https://iovs.arvojournals.org/article.aspx?articleid=2164693
2 Likes
Sue
#22
I have been preparing a frontal attack on my intermediate dry AmD I have added new supplements to the rapa protocol. So I don’t have too much mtor1 suppression timing of supplements changed too. When I was researching , I was disturbed to learn that the brand of AREDS2 that contains zinc is actually harmful to me and increases my risk of advanced AMD.It was mind blowing. I contacted a company articdx out of Ohio. they do genetic testing for macular degeneration and give supplement advice