Hard to Know

We made it to Fort Lauderdale earlier this afternoon. We thought we could go and walk along the intracoastal waterway this evening but they want $50 to drive us there and back. No thank you! I guess that means you are stuck with me.

We flew Delta from Pennsylvania. My husband is sighted and was able to navigate through the airport for me. Overhead signs telling us about arrivals and departures were nothing I was able to read. However, if I had been traveling alone Delta does provide personnel to help the visually impaired from gate to gate. You can either alert a skycap or have your driver alert a skycap when you pull up at the curb. Detroit airport is massive. While I could have made my way by asking random people for help, it would have been easier with somebody assigned to me.

I looked over the Detroit airport accessibility plan. It was pretty much ADA right down the line. Heavy on physical disabilities. Same for the Lauderdale airport. Visual impairment does not get a lot of ink when they write these things.

I have my phone set so I do not get roaming charges while we are abroad. There are instructions online about how to go into settings to do that.

Both hotels we have been in have courtesy WiFi. Once I had trouble connecting and the desk clerk helped me with no problem. If you let people know you have a vision problem, they will help.

Being a tech novice and also fairly new to visual impairment, I am not sure how to work my phone GPS without having the phone data on and subject to roaming charges. Pretty sure there is a way but I am not sure what it is.

Oops. Yes, there is an online tutorial for that. You have to load the maps you think you will need before you turn off your data. Live and learn.

I got GPS on my iPad alright. I guess I will just need to carry that in case I get separated from my husband and need to navigate on my own. I can get GPS through Google Maps by using WiFi.

And since I have WiFi here at the hotel, I guess I can look at some articles. I have about 100 words to play with.

Just to complicate matters, Medscape recently did a post on genotyping and nutritional supplements. Assel et al quoted three studies all of which suggested there is no significant relationship between your genotype and your chemopreventive diet selection. What they are saying is “to zinc or not to zinc” is not a question. If you are a candidate for nutritional supplements, whether or not you use zinc does not make a difference.

Sometimes it is hard to know what to believe; huh?

Catch ya later. We get on the ship tomorrow around noon. Then I go black until Cartagena.

Written October 30th, 2017 Continue reading “Hard to Know”

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Too Much of a Good Thing

by Cora Lyn Sears (see her biography at the end of this page)

2016 was a bad year. In the Spring I lost my hair, in the Fall I was diagnosed with wet AMD. How much worse could it get?

About 11 years ago I was diagnosed with mild AMD in both eyes, and took the Vitalux brand AREDS2 eye vitamins faithfully twice a day. (my mother lost her vision to AMD).

At my regular optometrist appointment last Fall it was determined one eye had advanced to wet. I was devastated! I hadn’t noticed much change in my vision, except I needed slightly more light to read and the reading portion of my progressive lenses seemed to have gotten smaller. The Amsler Grid still showed the same few wavy lines and few very light ‘puffs of smoke’ but nothing terrible. The speed of what followed was a bit scary – an almost immediate appointment with a retinal specialist followed by my first injection the next day.

Before this I had known of the injections for wet AMD but hadn’t thought much about them, thinking incorrectly a few injections would stop it almost permanently.

To date I’ve had the first three injections followed by the OCT testing which showed bleeding still happening. Then two more and another test. Still bleeding. Now on my next group of three.

I had begun researching and discovered your Facebook page and website, spending more time online than I thought possible. The more I read, the more I needed to read. The links to articles about the amount of zinc in my eye vitamins being a possible problem led me to search for the ones with less zinc, which were actually not that easy to find. Someone on your Facebook page suggested Walmart, which is where I finally bought them and switched in the late fall. [Lin/Linda: there are several options from Walmart, only PreserVision have the exact ingredients from the AREDS2 research study.  Click here to see what’s available.]

Now the other part:

Last spring I started losing my hair and within three weeks I was completely hairless. Alopecia universalis!  I tried everything my doctor or I could find with no success. An appointment with a dermatologist confirmed my worst suspicions that this was permanent. Apparently an autoimmune problem. Zinc enhances immunity, right? And I had been overdosing on it for over 10 years. So less zinc should help the autoimmune caused hair loss, shouldn’t it?

But then why is so much zinc in the AREDS2 formula when AMD is connected to the immune system as well?

In January I grew a few eyelashes, then came a few baby fine eyebrow hairs. Now, 14 months after losing my hair and seven or so months after cutting down the amount of zinc, I am starting to see a tiny bit of new growth on my head – only perhaps a few dozen or so, but it’s a start.

It’s amazing how everything in our body is connected and works in harmony, until it doesn’t.

An afterthought… Use the Amsler Grid by a window, not in the bathroom. I saw more wavy lines and puffs of smoke there than I had seen in the bathroom.

written July 23rd, 2017


I’m a healthy 70 year old woman. That’s hard to write as I really still feel 40. I live in Victoria, a beautiful city on the west coast of Canada. I’m divorced with two children and one older teenage grandson. I hike about 5 miles three or four times a week with a wonderful group of like-minded women. I’m a retired journeyman painter with varied creative interests such as sewing and photography. I love to travel, whether a road trip or something farther afield. I’ve followed a low-carb diet for years. I’ve had both hips replaced due to arthritis and sometimes I think if this was 50 years ago, I’d be sitting in a corner in a wheelchair going blind.

 Back to Our Guest Authors: Their Stories

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Genetic Rant & Roll – The Miniseries: Part 10

Lin/Linda here:  Here we are, at the end of what seems like a long journey.  We want to wrap this up with some thoughts we each have about the value to us of the genetic testing that we had and offer some words about genetic testing in general.

Before I start, we want to thank Gerry at ArcticDX for having us tested and for patiently explaining the results to us.  We’ve learned a lot.  Of course, as we’ve mentioned several times, there are other sources of genetic testing (there’s a link at the bottom of Part 1).  Let’s first discuss the testing that we had which is the Vita Risk test.

Benefit to me

I’m not the ‘typical’ person to be tested in that I don’t have AMD but I am very glad that I found out that I am zinc sensitive which means that if/when I develop the disease, I will NOT take zinc but I should take the antioxidants that are in the AREDS/AREDS2 supplements.  As to whether knowing that I’m in the 81st risk percentile is valuable, I expected to have a higher-than-average risk because my dad had AMD. But then again, my grasp of what numbers really mean has never been that great! ::smile::

General benefit in my opinion

I think that the real value is for people with early, intermediate or advanced AMD in only one eye to have both the Vita Risk and Macula Risk testing.  In addition to knowing what supplements will help or harm, the patient can find out what their risk is of developing advanced AMD in the next 10 years.  That information can help their eye doctor manage their care in the best way possible.

For someone who is categorized as high risk (M-3 or M-4), that may also provide the motivation the person needs to work on their part of the equation which is the 30-40% of the overall risk that is based on lifestyle factors like nutrition, weight, exercise, blood pressure and cholesterol control and smoking.

Even before I had the Vita Risk test, I knew I would have a higher-than-average genetic risk so I’d already started to work on my issues with nutrition, weight and exercise.  Luckily, my blood pressure and cholesterol are fine.

Zinc

There are some people who believe that the solution to one’s concern as to whether they are zinc sensitive is to not have genetic testing done but to take a supplement with a low dose of zinc or without any zinc.  That is an option and may be the only one available to those whose eye doctor does not work with genetic testing like this or for those whose insurance won’t pay for it.  Some things to consider:

  1. Zinc did help some people in the AREDS1 & AREDS2 trials but there was also benefit without it.  In both studies there was a group who received antioxidants with zinc and one who received antioxidants only.  The reduction of progression to advanced AMD was significant for both groups:
    1. antioxidants with zinc: 25% reduction
    2. antioxidants without zinc: 17% reduction
  2. Supplements, vitamins and minerals are not regulated by the FDA. However, the National Institute of Health has guidelines.  For zinc in terms of safety, the upper limit is 40 mg.  The dosage used in the AREDS1/AREDS2 studies was 80mg.  There was a subgroup in AREDS2 where the dose of zinc used was 25 mg and they found no difference between the results of it and with the results of the groups who got 80mg.
  3. For those who are zinc sensitive, even 25 mg is considered to be too much.

The point is that everyone has to make their own decision as to how to handle the issue of benefit vs risk of taking zinc without the knowledge that comes from genetic testing.  Is the difference between 25% reduced risk of advanced AMD with zinc that much MORE than 17% without zinc?   I’m certainly not the person to ask about that one! ::smile::

 

Continue reading “Genetic Rant & Roll – The Miniseries: Part 10”

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Genetic Rant & Roll – The Miniseries: Part 8

Lin/Linda here again to finish up my report.

On to the graph.  I AM sensitive to zinc!  Gerry told me never EVER to take zinc.  He said that I am the ‘poster child’ and why they really want to do these tests. I don’t have AMD now but this gives me VALUABLE information if I do develop it.

It shows what happened to the ‘average’ participants in the AREDS study (first one) who had the same genotype as me in regard to CFH & ARMS2 only. Each line shows one of the 4 treatment groups in the study (the key is below): placebo is solid blue line, antioxidant is dashes in red line, AREDS F(ormula – the one with zinc) is dotted blue line,  and just zinc is green line with dots).  What it shows is that the zinc & AREDS Formula with zinc groups progressed to advanced AMD faster than the other two groups!  Yikes! Scary!

 

 

 

If you look back at Sue’s graph, participants in the AREDS study progressed at the same rate over the 7 years of the study no matter what group they were in.  So because of her CFH and ARMS2 genes, none of the study treatments – antioxidants alone or AREDS Formula with zinc or zinc alone – would have helped.  Remember, she’s sadly already at advanced AMD.  For a person who has financial constraints, knowing this in the early stage could have saved quite a bit of money spend on supplements.

 

So that’s the end of the analysis of our reports.  Most of the people who have genetic testing will also get a 10 year prognosis which is used to advise their eye professional as to what their care plan should be.  That’s in the next page.

Click here to review the research that supports the genetic testing by ArcticDX.

Click here to review the findings about the dangers of zinc for those with a specific genotype.

Click here for other sources of genetic testing for AMD through the US National Center for Biotechnology Information (NCBI), a division of the National Institute of Health. This is their Genetic Testing Registry with labs around the world not only in the US.

Continue reading “Genetic Rant & Roll – The Miniseries: Part 8”

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Genetic Rant & Roll – The Miniseries: Part 1

First the disclosure statement: we actually got our first ‘perk’ for doing this webpage. ArcticDX, the parent company for Macula Risk and VitaRisk genetic testing, has provided Lin and I each with a free genetic test Vita Risk to see if we have the genotype that interacts with zinc and makes your AMD deterioration progress more rapidly than those without it.  The price quoted to the public for these tests is $500 each without insurance, $50 copay if an insurance covers it.

That said, we have no intention of letting these generous gifts cloud our judgment about whether we think the information was valuable, etc. However, we will be using their products, talking about their products and consulting with their genetic counselors because we have been able to use their product for – one of my magic words – free. If you have a genetic testing company and wish to extend us free services, we will write about your company also.

OK. Thanks to Gerry and all of the folks at Arctic. It is exciting for us to think you believe in us and the quality of what we are doing enough to want to be associated with us.

I got my kit midweek and just got around to opening it this morning. I had wanted to give myself plenty of time to do it because I am really lousy at following directions. Fortunately for me directions were pretty basic and straightforward. You open the envelope, run one brush around the inside of one cheek, scraping 20 times, and then scrape the second brush on the inside of the second cheek. I did it first thing in the morning, before breakfast, so there was no stray DNA in my mouth. Never really thought of chicken or pig DNA being in my mouth after a big breakfast, but it would make sense.

I thought my cheeks would be tender but I hardly felt it. The brush is very gentle.

The kit is now sitting in the mailbox waiting for the letter carrier to pick it up and send it on its way. Not sure how long it will be.

The literature that came with the kit is possibly a little more optimistic than I would like, but this is the nature of advertising. I don’t believe medicine is quite able to apply genetic information in determining treatment and management strategies as well as the brochure suggests. Someday. I am interested in seeing what kind of ‘personalized treatment’ is going to be suggested. [Lin/Linda: at this point in time, the results can provide guidance to eye professionals as to creating treatments plans (how often to have an office visit, how often to have various eye tests) and whether AREDS supplements are advisable and with or without zinc.]

That is our most recent venture into the brave new world of AMD and vision loss. Please keep in mind: we are two sets of experiences, two opinions only. If you have experienced or believe something different – or even if you back us up for that matter – let us know. We are on this journey of exploration together.


Lin/Linda: I do not have AMD so there is no way my insurance would have paid for a test for me.  However, I do have a family history and I am the “right age” as the company representative told me & it will tell me if I’m one of the ‘zinc sensitive’ people.   Neither of us could benefit from and we did not have the Macula Risk test that ArcticDX has which includes a 10 year prognosis.  The prognosis shows estimated progression to advanced AMD which is what Sue has.  And I don’t have AMD.

 

Click here for contact information for ArcticDX.

 

 

 

Click here for other sources of genetic testing for AMD through the US National Center for Biotechnology Information (NCBI), a division of the National Institute of Health. This is their Genetic Testing Registry with labs around the world not only in the US.

Continue reading “Genetic Rant & Roll – The Miniseries: Part 1”

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I Am Not a Doctor

Commentary: Lin just sent me a post from someone in the Facebook group. She asked for my reactions. The person is claiming he completely reversed neovascular (wet) AMD with nutritional treatments. Here goes.

First the disclaimer. I am not a doctor. I am not a nutritionist. I am a woman with dry AMD who has tried to educate herself about her disorder. Therefore I do not, by any stretch of the imagination, have all of the answers. End of disclaimer.

That said, let me congratulate him on his greatly improved vision! I am glad he are doing well.

I know some of what he says is true. In general the diets of those in the developed world are atrocious. We should be eating many more fruits and vegetables, especially our leafy greens, than we do. The reason taking the AREDS/AREDS2 supplement works to slow the progression of the disease is probably our poor diets. If we ate well, the supplements would not be so needed. [Lin/Linda: I have to mention that there is some risk taking the AREDS or AREDS2 with 80mg zinc.  It can cause problems in the genitourinary tract but there is evidence that for people with certain genes, that high dose of zinc can cause their AMD to progress faster. Since not everyone has easy access to the genetic tests, there are supplements with no zinc or less zinc.  Check out this post for more information.]

Angiogenesis is the growth of new blood vessels. This is a hallmark of wet AMD. There is some evidence angiogenesis is part of the healing process and may be triggered by inflammation (Reiner O. Schlingemann in Role of Growth Factors and the Wound Healing Response in Age-Related Macular Degeneration). There is also evidence that retinal hypoxia (in English? Your retina is gasping for oxygen) is a trigger for angiogenesis and neovascular (wet) AMD. (Citation same guy. It is so nice not to have to follow APA format? [Lin/Linda: APA is the American Psychological Association and when you write something for them, you need to follow a very strict format for references to articles.]

That said, theoretically it is possible he hit upon a combination of nutrients that would reduce inflammation and increase oxygenation to his retina, thus somehow stopping the angiogenesis. Did this happen? No clue. I am just sort of a slightly-too-smart-for-my-own-good, visually impaired lady. (Gets me in a lot of trouble.) Is it possible? Sure. “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophies.” (That is the bard, of course).

Now, it would be my supposition – again totally unfounded – he was not in advanced AMD and had not experienced much if any photoreceptor death i.e. geographic atrophy. Unfortunately from what I have been told dead is dead with those. They would not have come back.

That is pretty much my take on it. Again when it comes down to it, I know nothing but I have a helluva lot of opinions. Don’t believe me. Offer your opinions. What do you folks think? Continue reading “I Am Not a Doctor”

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