• author
    • Debra DeAngelo

      Columnist
    • February 11, 2014 in Columnists

    My macular degeneration miracle

    (This column was originally published elsewhere in June 2010. Because so many people have requested it, I am reposting it here.)

    A little miracle was all I needed. Miracles do exist. I know. I’ve had one.

    About six years ago, at an ordinary eye checkup, the proverbial rug was pulled out from under me. Usually the doc says, “Everything’s just fine, but you can’t see worth squat.” He orders me new contact lenses, and I’m on my way. Not so that time.

    “You’re developing macular degeneration,” he said.

    Yeah, so?

    He clarified: “You’re going blind.”

    How about you just smack me in the face with a two-by-four, Doc.

    It only got worse: No ifs, no maybes, he said, it’s going to happen. It’s a one-way road that only leads to one destination. How fast you get there depends on how quickly the disease is developing. And I was in the fast lane, with the pedal to the metal. I’d gone from completely normal to having extensive drusen in the span of one year. Drusen is the pre-cancer of macular degeneration. And I was Stage III.

    As I understand it, drusen is a waste by-product that collects in the macula and eventually obscures the central vision, slowly expanding outward until nothing is left but the peripheral vision. The doc said it’s like you have all these little tables in your macula, and there are little busboys cleaning up the dirty dishes.

    “Your busboys are on strike,” he said.

    So, what’s the cure, I asked.

    “There isn’t one,” he replied.

    How long until I go blind. His response: six months to 50 years. Now, there’s a really helpful timetable, one you can plan your life around. And, at this point, what else is there to do but freak.

    He responded with a verbal slap in the face: “There’s no point getting wound up about this, because you can’t cure it and you can’t predict it. The best you can hope for is to stop the progression.”

    Through my whimpering, I detected a thread of hope. He said sometimes mega-doses of particular vitamins and supplements prevent the progression of drusen into macular degeneration. And baby, I started mega-dosing away.

    I also got a second and third opinion, but not a different diagnosis or prognosis. At least the UC Davis ophthalmologist offered a little comfort. She said I wouldn’t go blind overnight. It would happen gradually, and the first thing I’d notice would be straight lines appearing wavy, then blurry central vision. Eventually the blurry spot would expand outward, then go dark. In time, so would my whole world. But at least I’d have some warning. Take the supplements, she said, and just hope for the best. So, I did. What other choice did I have?

    I took the supplements faithfully, and yes, they cost a fortune, but what price your vision, you know? I also developed a renewed appreciation for reading a book or driving a car, or enjoying a rosy sunset or gazing upon the face of a loved one. Suddenly, these things became unspeakably precious.

    A year of mega-dosing and hoping went by. At my next exam, I was elated when the doc reported that my drusen was unchanged. This was the best possible outcome I could hope for. Or so I thought. Two more years went by, and two more “no change” reports, and I was thankful for every penny I’d spent on supplements.

    In spring of 2009, however, the doc looked in my eyes, and this time there was a change. The drusen was gone! It seemed, literally, too good to be true. Impossible, in fact, I’d been told. So, I returned to UC Davis for another second opinion. A different doctor noted my history, dilated my eyes, examined them from every direction, and detected no drusen.

    “But isn’t that impossible?” I asked. He responded rather tersely, “It’s not a condition that we think of as changeable.”

    But it IS changeable. I’m living proof. So help me God, this was my experience.

    They photographed the insides of my eyes, but sadly hadn’t done this at my first visit and had nothing to compare to. I got the impression that this doctor just didn’t believe it, despite my medical records. I was hoping UC Davis would study the supplements I took (because I took more than just what they recommended), and discover the exact regime to prevent macular degeneration blindness. But some folks out there may not want to wait for that. So, for anyone who’s interested, here’s what I took, every day, without fail. It may not have the same effect on anyone else but if you want to try it at your own risk, here goes:

    I take the equivalent of the ingredients in Vitamin World’s Eyeguard Plus With Lutein via my own concoction: two Vitamin World Ultra Woman Sport multi-vitamins, 25,000 i.u. of beta carotene (must be beta carotene, not Vitamin A, or it can be toxic) and one Eyeguard Plus With Lutein rather than the recommended four. Additionally, I take 20 mg. lutein, 60 mg. standardized bilberry extract, 800 i.u. natural Vitamin E (d-Alpha Tocopheral – MUST be natural E or it can also be toxic), 1,000 mg. Vitamin C, and 60 mg. gingko biloba.

    I also drink 16 oz. of kombucha tea (I learned to homebrew it) almost every day, and infuse my diet with dark leafy green vegetables, tomatoes, orange bell peppers, carrots, sweet potatoes and butternut squash. I seek out foods high in zeaxanthin, particularly goji berries, and often snack on pumpkin seeds. Cost? So what. I can see. Six years ago, I didn’t think I’d be able to say that much longer.

     

    —————-

    Update: As of my last eye exam in 2013, I still did not have any detectable drusen or other evidence of macular degeneration. I still eat the foods and take all the supplements I mentioned, with the exception of the kombucha tea, which I have lagged on drinking simply because I’ve been too lazy to make it. I do purchase it by the bottle whenever possible. I have also been a bit lax on the gingko and bilberry (although both are in my multi-vitamin). To date, I have not had any negative side-effects from taking these supplements.

    Also to date, UC Davis has never shown any interest in including my experience in their research, despite the fact that my case is documented in my medical history. This upsets me immensely.

     

     

     

     

     



    • Fascinating. If I ever know of anyone with this condition, I am directing them immediately to your column. I always find it so sad that people in the medical field do not immediately leap on the personal experiences of their patients that seem to indicate success. What if your experience held the key to reversing macular degeneration?



    • Kathie – it is MADDENING. And, UC Davis is aware that the supplements might work, because it was one of their ophthalmologists who gave me the exact formula to take. The key with macular degeneration is to catch it at the drusen stage. And THAT means – we should have our eyes checked EVERY year. Even those with no vision issues – I would recommend that by age 35, you have an eye exam every year.
      When I thought I would be blind within a year that first year when I suddenly had this issue – I was crushed. I started thinking of all the simple things I’d never do again – read a book, drive a car, see a sunset. I was devastated.
      Your sight is so precious. I’d rather lose any other sense than that one.



    • Debra – Thanks for reposting. My dad’s sister (my aunt) had macular degeneration which manifested – or maybe was first detected – about 10 years before she passed away. When we moved from Roseville to Ojai I decided to start watching for macular degeneration if for no other reason than I was writing and reading and loving life. I went to the optometrist to get a new glasses (eyes too allergic to comfortably wear contacts) and I mentioned that my aunt had macular degeneration. “Could you look closely to see if I’m in any danger of developing it too?”. He surprised me when he said, “It looks like you do. I’ll make an appointment with an ophthalmologist so you can get a proper checkup.” This I did. It turned out that I have macular degeneration in both eyes which explains why I can’t see things very well at night or in the dark. I’ve been on a similar supplement regimen as you for 4 years now and there is no progression. I can only hope for a total remission. Again – thanks for sharing your experience.

      P.S. I believe in supplements. For my macular degeneration I take the prescribed OTC “PreserVision” (one capsule per day) plus a Vitacost “Synergy” multi-vitamin (one capsule per day) and love my store-bought kambucha. The cost of the supplements is substantial but the cost is worth it to me.

      P.P.S. – No one wants a chef who can’t see!



      • Wow, Randy… I had no idea you are dealing with this. What a shame they didn’t catch it earlier. But… the supplements are working for you too, and that is fantastic news! And yes, the supplements are worth every penny! Keep taking them, and good luck, and let’s hope for a remission! It took me about five years before it all disappeared… don’t give up!


      • barbara

      • February 11, 2014 at 2:49 pm
      • Reply

      Hi Deb; Got my regular checkup, the Doc redid it, said she may have interpreted the photos a little extremely last year! I still have a few signs of pre MD but no progression. And she said to come back in 2 YEARS—- still take the Preser-vision and vitamin C though.



    • Gasp! Am going downstairs to take my supplements. Really helpful.



    • I am so thrilled for you. I too have eye problems, of a different nature, and have been, of course, scared of many things including macular degeneration. I’m so glad you had a miracle. Praise be to vitamins!



    • What an inspiring story! How did you come about this vitamin and supplement mix?



      • Hello Ryan, the particular cocktail for the vitamins and supplements came from an ophthalmologist at the UC Davis Medical Center in Sacramento named Dr. Lee. Sadly, she is not there anymore. She is the one who saved my vision. Essentially what she told me was to double the dosage of a market-brand eye supplement, that I can’t recall the name of. Because I like Vitamin World products, I replicated that using their products. There are a couple warnings, however. If you have been a smoker, there are issues with taking mega-doses of Vitamin A. And, the Vitamin A MUST be in the form of beta carotene or it can be toxic. Likewise with Vitamin E – it MUST be the natural form, and not synthetic.



    Leave a Comment