Surprise and Hope: Am I Really "One of the Lucky Ones?"

by CliffT
(Chicago, IL, USA)

I offer this somewhat abbreviated anecdote realizing readers may take it with a shaker full of salt, but intend it to convey a personal glimpse of valid data should there be more generality to what’s reported than I can claim. The surely skeptical responses from most (but not all*) doctors with whom I’ve shared earlier versions of this document I paraphrase as, “I’ve never heard of that.” (The age related macular degeneration (ARMD) diagnosis occurred in January, 2015.)

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Maybe a year or more before my ARMD diagnosis I noticed shadowy blobs occupied less-dark portions of a negative illumination effect after turning out the lights at bedtime. Only later did distinct “blind spots” appear in the centers of my visual fields in low light conditions. At first they just darkened the centers of both fields of view, but eventually in very dimly lit situations completely obscured them. For example, by late 2015 if I got up at 4:00 AM to visit the bathroom I could see my way there quite clearly, but if I wanted to turn on the bathroom lights my ability to see the switch might be partially or totally obscured depending on the amount of light coming in through the bathroom window. On unusually dark nights, unless I directed my view slightly to one side the light switch was simply hidden from view. I never noticed a similar effect under lighting sufficient for me to read, do most every day activities, or watch a movie in a darkened theater (although moving about when the screen was dark occasionally was a problem), and I’ve always been far-sighted enough to have no trouble reading names on ordinary street signs from a half-block away and more even while driving at night.

Interestingly, during the summer following my ARMD diagnosis and lens replacements commercials appeared on TV for over-the-counter (OTC) products with names like ████ and ███████ meant to be taken daily to protect purchasers’ vision by providing slightly varying assortments of ingredients. Soon after their appearance some were rather publicly criticized in (if my memory is correct) Consumer Reports or AARP as a waste of money (maybe my own too harsh words), because the amounts of two key compounds, lutein and zeaxanthin, were so low as to provide little if any benefit to buyers. My take on that observation, much other reading, and following the travails of stricken friends and relatives is that such products may slow the deterioration of victims’ vision, but offer nothing toward improving ARMD conditions.

Full Disclosure: Early on I bought one such product, but soon quit using it, because a major component was vitamin E, which fairly recently has been linked to prostate cancer specifically, has long been “known” to promote angiogenesis so has been widely used topically to reduce scarring from surgery or injury, and possibly contributes to tumor growth by facilitating increased blood flow to malevolent tissues. Several other ingredients of those products, like Omega-3 fatty acids and vitamin C, I consume among an array of dietary supplements every day anyway, but much less of the copper and zinc present in some due to a perhaps excessive concern over taking in too much metal on a daily basis. With their other contents accounted for and given my layman’s understanding of how ARMD progresses, why would I purposely ingest a substance that may further already recognized, potentially destructive vascular developments in my eyes?

While perusing the OTC medications and dietary-supplements section at a nearby █████ in late 2015 as I searched for lutein and zeaxanthin concentrates that were free of vitamin E, I came across a soft-gel pairing of the two with five times the amounts per pill (25mg and 5mg, respectively) included in the criticized products with no additional active ingredients listed. I’ve since taken one of those pills every day. (I use the shorter term “25/5 l/z” below to connote this product.)

In early July, 2016 images from a pair of retina scans showed damaged tissue patterns that matched the different shapes of the blind spots I was seeing under low light conditions. For the first time I was able to distinguish which blind spot was in each eye. By then both had morphed from oval-shaped blobs to looking like black “clown smiles,” with one having a feathery “wing” swooping up from its right corner—exactly what was shown in its scan image to be in my right eye. It was during that session that an ophthalmologist I’d not seen before (the previous one had retired due to poor health) asked if I was taking any of the OTC products promoted on TV and recommended one

variety by name. I replied I don’t, won’t, and why, and described what I was/am taking. That visit did not go well, starting with her somewhat resentfully finding me sitting at “her desk” in a patient-consultation room poring over computer images of my maculas within which areas of damaged tissues were clearly discernable even to me. It ended without a single word being said about those displays, a demonstrative dismissal of my comments, and her expressing frustration that I seemed intent on ignoring her advice.

(Yet, hardly a month earlier a retinologist I’d begun seeing in December, 2015 was quite accepting of my explanation for not taking the sorts of OTC products I’ve mentioned during a more wide ranging and certainly more amicable exchange.)

Soon thereafter, like maybe within a week--two at most, I noticed the blind spots I was seeing in low light began looking like the night sky seen through a thin haze that hid all but the brightest stars or a swatch of dark cloth decorated with a few widely spaced, shiny sequins. These were not the random bright flashes I’d repeatedly been asked about, but sat in fixed positions on an otherwise black background. After a month or so the sometimes vision-obscuring fields abruptly turned a vivid green while during that time the points of light had widened to small disks. By early September the opaque fields contained still larger, more densely packed, round light patches, and a few weeks later took on a reddish cast and ragged-edged shape of rolled-out cookie dough from which large, circular cutouts had been removed. Then, surprisingly, in mid- to late October I realized the blind spots had simply disappeared from view in both eyes even under very dim light. (Incidentally, I’d not been able to make out anything in those lighter disks that could be tied to what was visible around the edges of the dark fields. It was not at all like looking at my surroundings through holes cut out of an opaque mask.)

In a December, 2016 visit my retinologist reminded me the 25/5 l/z regimen I’m following has not been systematically studied, but as I departed he asked for my permission to scan the then current version of this account I’d left with him into his records. He also lengthened the interval between visits from six months to nine, which I hope is a positive sign.

Having passed through those green then red phases, I wonder if the dark fields were initially a very dark blue, which, if they were, may suggest that a largely unheard of “remission” (a word I prefer over the too optimistic “recovery” or less so “stabilization,” which doesn’t allow for the improvements I’ve seen) has occurred seeming to somehow affect my visual sensitivity to light of longer wavelengths. In any event, my vision in dimly lit situations seems almost back to the pre-diagnosis normal. Even the negative illumination effect following turning off the lights at bedtime is no longer apparent.

Perception v. Reality: Almost! Although now ordinarily out of sight, ARMD’s damage remains. First seen again in April 2017, my “blind spots” may briefly reappear at night after a day spent in bright sunlight without protective glasses or an evening using an Ereader. Following an unusually long slit-light examination in early August they persisted in low light for about a week, sequentially passing through black, green and red color phases as they shrank and faded from view.

My focus on vitamin E may be misplaced, but its suspected fostering of circulatory change seems left unacknowledged among possible responses to tissue stress arising from accumulating cell debris and other detritus in one’s macula along with falling lutein and zeaxanthin levels. And, speaking of detritus, some sources identify it and Omega-6 fatty acids, also found in some “eye health” medications, as somehow contributing to potentially harmful deposits in or around the brain, eyes (age-related macular degeneration has been called “Alzheimer’s disease of the eye”), and other organs in the body.
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*In February, 2017 one of the contrarians said about me to my wife, “He’s one of the lucky ones.” What am I missing?
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Except for the “Perception v. Reality” paragraph and a few word or phrase changes, this anecdote was largely composed Thanksgiving weekend, 2016, about a month after my blind spots vanished from view, and reflects my observations and thoughts at that time. The “surprise and hope” remain true today, roughly a year and a half after that realization. What’s been deleted for this abridgement has to do with my family health history and speculation as to diagnostic blood testing.

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