macular degeneration, macular, diagnosis Supplements – My Macular Degeneration Journey/Journal

AREDS2-based Supplements with 0 or 25mg of Zinc

AREDS2-based Supplements with 0 or 25mg of Zinc

This list doesn’t represent ALL the products that meet this criteria. I’ve used links to the company’s sites, but before you buy, check out prices on Amazon. You might also Google the product name & use the Shopping option.

We get no benefit from listing these products.

The AREDS2 Formulation

  • Vitamin E 400 IUs
  • Vitamin C 500 mg
  • Lutein 10mg
  • Zeaxanthin 2 mg
  • Zinc 25 mg or 80 mg
  • Copper if there is zinc

For details about the AREDS2 study, go to Should I take eye vitamins? What’s AREDS2?


Products with AREDS2 basics but 0mg of zinc and no copper

VisiVite

VisiVite® AREDS 2 No-Zinc “White Formula” has AREDS2 basics with no zinc

Viteyes

Viteyes Classic AREDS2 Zinc Free

Doctor’s Advantage

Macular Shield Zinc Free

Focus Vision Supplements

Focus Select Zinc Free 

Lunovus

Lunovus Zinc-free AREDS 2

Lunovus Zinc-free AREDS2 Chewable


Products with AREDS2 basics with 25mg of zinc

MacuHealth Plus in the US, MacuPrime Plus in the UK and Europe

MacuHealth and MacuPrime products contain not only lutein and zeaxanthin but also meso-zeaxanthin which studies have found to be as important a carotenoid as the other 2. For more about the studies, Google Professor John Nolan at the Waterford Institute of Technology of Ireland. He and his colleagues have been studying the 3 carotenoids for 20:years.

This is NOT the same as MacuShield which is a UK product.

MacuHealth Plus

MacuPrime Plus 

Viteyes

Viteyes Classic AREDS2 Capsules 

Viteyes Classic AREDS2 Softgels

Lunovus

Lunovus AREDS2 Macular Support

Lunovus AREDS2 Macular Support Chewable

Lunovus AREDS2 Plus Meso Macular Support

Doctor’s Advantage

Doctor’s Advantage Macular Shield 

Focus Vision Supplements

Focus Select 

Focus Select Chewables

 

Personal Message December 11th, 2021 Our Genetic Guns: Part 5 and Final

Continued from part 4

Comment 10: Should The Moores Take a LMZ Supplement?

Looks like it would be of benefit to us since:

  1. We are not confident that our diets give us enough LMZ.

  2. We don’t know if our macular pigment and level of carotenoids in the brain are sufficient, which is what this research has shown to be important in reducing our risks of both AMD and Alzheimer’s

Can’t We Just “Pop a Pill”?

Taking a supplement is NOT a substitute for eye- and brain-healthy eating. We will still be eating our leafy green vegetables and colorful fruits and vegetables and other eye-healthy foods to get the other nutrients we need such as Vitamins A, B, C, and E (we were found to be deficient in D so we each take a Vitamin D supplements) and the other essential nutrients. We eat healthy plant-based foods and wild-caught salmon 2 or 3 times a week to get our Omega-3 fatty acids.

First Things First

There are always 2 concerns when considering any supplement:

• Are the ingredients generally safe to take & specifically safe based on one’s medical history & use of medications?
• If they are, which product is the best one as verified by one or more respected, independent testing labs?

Are the Ingredients Safe for Each of Us?

You should ALWAYS talk to your medical doctor before starting a supplement, especially if you have other diseases and take medications. We have different GPs, and we’ve been in touch with them. No problem.

Here are the 2 things I always look for:

  • Are there interactions with the medications we take and the diseases we have? I checked rxlist.com and drugs.com. I checked each of the 3 carotenoids. No interactions for either of us. There are very few issues for anyone, but check it out for yourself.

The 20 years of this research has shown these 3 carotenoids are very safe. There is research to back that up, but it’s beyond the scope of this post.

Comment 11. Which Brand?

I came to this stage in my research feeling confident that taking LMZ was safe for both my husband and me. I had also, to the best of my ability, gone through the research done by Dr. Nolan and his colleagues and felt confident that it met my criteria for solid, scientific research (according to the criteria I listed in Comment 4.)

The next step was to confirm which product was used in Dr. Nolan’s research. It’s what’s currently in the products MacuHealth (available in the US & Canada) and MacuPrime (UK & Europe).

If you watched the ‘Preventing Macular Degeneration Through Science’ video I posted last week (you did, right? ::smile::) you heard Dr. Kerry Gelb say he takes the MacuHealth product when he interviewed Dr. Nolan. Dr. Nolan said he takes it, his wife takes it, and his young daughter sometimes does as well. He and his family have since switched to MacuPrime.

Confusion

If you read the 2014 scientific paper from the CREST trials (you did, didn’t you? ::smile::), you’ll see the product listed as MacuShield. There’s a LOT of confusion about that! I reached out to Dr. Nolan who apologized for it (though it certainly was not his fault). At that time, the company that commercialized the formulation available to Dr. Nolan in the UK was MacuVision Europe, and they branded it as MacuShield. The company was then sold to Alliance Pharma who did not continue with the same formula that was tested. The company in the US that had the world rights to the formulation at the time of the study was MacuHealth (founded in 2006) and the product was then and still is MacuHealth.

Any research after this change in companies was with MacuHealth.

Clarification

Currently, MacuShield is a product only licensed in the UK and Europe. It is a TOTALLY different product than MacuHealth. I confirmed that in an email to the MacuShield company. They were very good and replied clearly & quickly. To be clear (again), MacuShield is NOT the product recommended here.

Bottom Line

MacuHealth products in the US and Canada and MacuPrime products in the UK and Europe are the products that contain the formulation used in Dr. Nolan’s research.

For those who are good candidates for an AREDS2-based formulation, there’s MacuHealth Plus and MacuPrime Plus. For everyone else, it’s just MacuHealth and MacuPrime.

For those who want an AREDS2-based formulation with 0 zinc, you can take MacuHealth/MacuPrime with LMZ and add 500 Vitamin C and 400 IUs Vitamin E separately. That’s the whole AREDS2 formulation.

Please remember my cautions for some of you who are or will be taking an AREDS2-based supplement – those of you with other diseases and who take medications. Please talk to your medical doctor before you start because the doses of Vitamin C and E in the AREDS2 formulation may be too high for you.

Comment 12: More Validation

I could have stopped there, but I wanted to make sure that I did everything for this product that I do for all supplements I choose to take.

Independent Testing

Of course, knowing that others take a product, especially if it’s the researchers themselves, is important, but so is independent analysis of a product.

Consumer Reports

Consumer Reports, a U.S. independent, non-profit organization recommends that since the FDA does not regulate food supplements in the US, it’s important to look for independent labs that test the products to make sure that what is on the label is in it. https://www.consumerreports.org/supplements/how-to-choose-supplements-wisely-a2238386100/

Consumerlab.com

My ‘go to’ independent lab, one recommended by Consumer Reports, is Consumerlab.com of which I’m a member. THEY are confused, too! Even though they are a U.S. company, they tested MacuShield, but not MacuHealth! I emailed them, and they replied that they DO know of the confusion and are working to resolve and report in it. I’m watching for their update.

NSF International

Another source of independent testing referred to by Consumer Reports is NSF International (it was originally the National Sanitation Foundation). The NSF has tested and certified  MacuHealth products (you can see what that means in the Consumer Reports Article above).
https://www.nsf.org/consumer-resources/articles/supplement-vitamin-certification

Supplement Certified

Another certification they have is ‘Supplement Certified,’ another independent lab that I referred to earlier. It’s a new project from Dr. Nolan’s Nutrition Research Centre Ireland (NRCI).
https://supplementcertified.ie/

Company Responsibility

If you listened to the podcast I referred to in Comment 3 (you did, didn’t you? ::smile::), you heard the story of how in one of Dr. Nolan’s clinical trials, when they used an early formulation with just lutein, they unexpectedly found meso-zeaxanthin in it. The trial was stopped, and the company stopped production and sales of the product for over a year. They did produce the new product and the trial continued.

Why Does It Matter?

So if a product has all 3 carotenoids (there are a few), what difference does it make which product you buy?

The lutein in ANY a product probably comes from marigolds. Where the marigolds are grown, what farming methods are used, and how it is processed is important. The processing creates the lutein, zeaxanthin, and meso-zeaxanthin that goes into the tablet or capsule that a person takes. The marigolds used for MacuHealth come from the same fields in Mexico and are tightly managed for specific best-farming methods.

In 2020, Dr. Nolan and colleagues did research (COAST study) to validate a new production method called Micro-Micelle(tm) that MacuHealth uses to make sure the LMZ has the highest possible bioavailability which means how well a substance is able to get into our circulation, to get to the target area, and to do what it’s intended to do. They confirmed that when they take the carotenoids in their ‘free’ form as in the original MacuHealth products, and enhance their stability plus use an oil base because carotenoids are oil solvable, this new technology gives you the best absorption of LMZ.

Read Reviews Online? Misinformation & Testimonials

I rarely do that (they are testimonials, after all), but out of curiosity I went to the Amazon listing for MacuHealth or MacuShield – can’t remember which, and found inaccurate information. Someone asked about MacuHealth and MacuShield: (paraphrasing) “are they the same?” and someone said “yes, they are. It’s the same company, but it’s called MacuHealth in the US and MacuShield in the UK.” WRONG! Yes, I told them that. ::smile::

Here’s another source of confusion. You CAN go to the Amazon US site and buy MacuShield. I emailed the MacuShield company about that since they’d told me they only have a license to distribute their product in the UK and Europe. The seller on Amazon US is a 3rd party distributor. If you purchase MacuShield through Amazon US, you will not get it right away because the 3rd party seller has to get it from the UK!

Got it?

Comment 13: A Beginning and The End

Whew!! Are you thinking, “All this to just pop a supplement? They’re ‘vitamins’ and as such, they can’t hurt!!”

If you’ve been with me long enough, you know how I react to that often-repeated opinion. They CAN and DO hurt SOME people.

However, having gone through this ENTIRE procedure which included talking to the researcher Dr. Nolan and others:

I CAN say that the research shows that taking LMZ in the MacuHealth and MacuPrime supplement is safe!

The Beginning

Change takes time. Making sure we’re getting the proper foods is work and a long-term commitment. We’ve only been taking MacuHealth for 2 months. We’ll be taking it for the rest of our lives.

As for us, I don’t expect to see quick improvements in our vision, but I certainly will be happy to have it be the best it can be as time goes on.

We both have issues with cognitive processing and memory (most likely due to medication), especially word retrieval which is a source of frequent ‘Charades’ (“You know, the thingie that you use for…whatever!”). Maybe someday we won’t have to spend so much time doing that! ::smile::

Not Pulling The Trigger

I started this with the sentence, “Genetics loads the gun, lifestyle pulls the trigger!”

What I HOPE and PRAY I can do is come back in 10 years to say that neither of us have AMD or Alzheimer’s Disease!

The End!

If you’ve read this far, thanks so much! Please let me know if you have any questions.

Personal Message December 11th, 2021 Our Genetic Guns: Part 2

Continued from Part 1

Comment 3. Three (3) Carotenoids, Not Just 2!

I knew that antioxidants are important in battling oxidative stress, so I decided that I should go back to one area that doesn’t get much attention despite its 20-year history of solid research. You probably have heard about 2 of them: lutein and zeaxanthin. There’s a third antioxidant called meso-zeaxanthin.

About abbreviations: Meso-zeaxanthin is often abbreviated as M or Mz, lutein as L, zeaxanthin as Z. Sometimes you’ll see LMZ or LMZ3.

Carotenoids

Lutein, zeaxanthin, and meso-zeaxanthin are called carotenoids. There are MANY others, including beta-carotene. They are pigments that give plants their yellow or orange color. When we eat plant foods, these pigments benefit the body in essential ways.

Macular Pigment

At the back of the eye, at the very center which is known as the macula, LMZ collectively join and concentrate to form a yellow pigment that is called macular pigment (MP). Macular pigment protects the macula from harmful blue light (because it is yellow and can filter out the blue) and provides antioxidants to keep the photoreceptors nourished & healthy to fight oxidative stress.

We Need All 3

The short story is that research has shown that even though there are about 700 carotenoids, only these 3 are found in our macula: LMZ. They have a synergistic effect on each other, which means we need all 3 of them, so they work at optimal levels. Pretty amazing that of all the carotenoids available from nature, the eye ‘chose’ these 3!

Eating Plant Foods

The important thing to know is that if we don’t eat plant foods, we won’t have macular pigment. A researcher quit eating plant foods for 21 days & had virtually no macular pigment at the end of that period. When he resumed a diet which included plants, his macular pigment recovered. https://profjohnnolan.com/wp-content/uploads/2018/05/loughman2012a-bjn-letter.pdf

It also means that if we don’t eat a sufficient amount of plant foods, we don’t have sufficient macular pigment.

It also means that if we don’t eat the plants that contain these 3 carotenoids, we may not have sufficient macular pigment.

Healthy macular pigment, which protects, nourishes the photoreceptors and fights oxidative stress, comes from getting enough of these 3 carotenoids.

With me so far? I hope so!

Comment 4. What Is Meso-zeaxanthin? Why Is It Important? Show Me the Research!

So what is meso-zeaxanthin, and why is it important? To be honest, it depends on who you talk & listen to and what you read. Research frequently comes down to the stories of the people who conduct it. That’s certainly the case with my journey.

The path I followed began when I listened to a September 3rd, 2021, podcast interview with Dr. John Nolan who has been doing research into the 3 carotenoids for the last 20 years (I’ll give you the link in Comment 5). Since then, I have watched countless hours of video, listened to hours of podcasts, and read (or tried to read) LOTS of scientific papers. I have enough of a background, education, and confidence in the scientific method that I felt I was able to understand and assimilate what I needed to be able to follow the research.

Little did I know how MUCH there was, but I was determined to dig through as much of it as I could. That’s why it took so long!

I found that there are many others who were involved and are still involved – quite a multidisciplinary collection of people. I’ll be introducing you to some. These are professionals who have dedicated their careers to the study of macular pigment in the macula which is only about 5.5 mm in the size!

Dr. Nolan (often referred to as Professor Nolan) is not only a scientist & researcher but also a compelling speaker and effective educator. He makes it clear that he’s only one part of this multidisciplinary team that has evolved over his 20-year career. During that time, he became the author or one of the authors of over 100 articles in peer-reviewed journals. You can find all his articles at https://profjohnnolan.com.

In the Beginning

In 2005 in Ireland, John Nolan defended his PhD in Biochemistry on a Wednesday and left for the US on a Friday. He’d applied for and was awarded a prestigious Fulbright Scholarship to study at the Medical College of Georgia. There he worked with researchers who were studying how lutein affects our eyes. [Personal note: My husband got his Occupational Therapy degree at Medical College of Georgia, although he wasn’t there at the same time. I’m always amazed at what a small world it is!]

When he returned to Ireland, he set up the Macular Pigment Research group at the Waterford Institute of Technology. There they began to collect a body of evidence that pointed to the macular pigment as critical to the health of our eyes and as an indication of the level of carotenoids in our brain.

In 2016, he set up the Nutrition Research Centre Ireland (NRCI) where he is the Director. They’re involved in numerous project including the new Supplement Certified program where they are testing supplements to certify that what is on the label is in the product. In 2021, they analyzed 47 nutritional supplements containing carotenoids and found that 64% did not meet the content described on their labels. They are also working with supplement companies, so they make sure that what’s on the label is indeed in the product. Since supplements aren’t regulated, this is welcome news! For more, go to. https://www.supplementcertified.ie

Continuing Down the Path

There’s MUCH more to Dr. Nolan’s biography. I hope you’ve read what I wrote in the Events post (Facebook page) which is more complete.

Here are the reasons I chose to continue:

⁃ Dr. Nolan’s research is based on recognized scientific methodology, where the results are published in peer-reviewed journals. In the world of scientific research, there’s something called the ‘Hierarchy of Evidence.’ Although the details vary from country to country, Level 1 scientific evidence means it was obtained through randomized, controlled clinical trials. Dr. Nolan’s research has been Level 1. https://en.wikipedia.org/wiki/Hierarchy_of_evidence

⁃ He does not work alone. He repeats this over and over in his articles and interviews. He frequently refers to people he’s worked with over the years. This isn’t a ‘one man show.’

⁃ His research depends on objective measures of the levels of the carotenoids in blood, the macula, and the brain. He uses state-of-the-art equipment, equipment that has improved significantly over the years.

⁃ He does not work for any company exclusively. He has tested many supplement products. The main funding for his research comes mostly from government sources, including that of Ireland and the EU.

⁃ When he first started using an LMZ formulation from a specific company, it was with the agreement that he would publish the results no matter what they were. And he did!

NEXT: PART 3 –COMMENT 5. DR. NOLAN’S RESEARCH: HIS QUESTIONS AND ANSWERS

Personal Message December 11th, 2021 Our Genetic Guns: Part 1

A Personal Message from Me, the Founder and Administrator of This Group. December 11th, 2021.

This began as a project for my Facebook Group founded in May 2016 to be an extension of this site. The day before I posted it, I decided that it should be here, too, for anyone who can benefit. I apologize about the ‘comment’ format. I hope it’s not too distracting.  – Linda Chernek Moore.

Who should read this?

Everyone who is concerned about eye and brain health:

• those with and without macular degeneration,
• those with and without cognitive problems, including Alzheimer’s Disease.

In my opinion, that means everyone here.

My Journey Story

I will – for the first time in over 5 years here – tell you what supplement my husband and I take and why. I will take you step-by-step through the process of how I came to select it for us.

This isn’t a sales pitch because I’m not actually promoting a product, I’m actually promoting good scientific research.

Why am I sharing it in what seems to be a ‘big way’? It’s because I think it is important. You probably know how cautious I am about supplements. I do not promote the “It’s a supplement/vitamin, it can’t hurt!” They CAN hurt some people. I have many examples of that.

This is one of the FEW times I’ll be able to say, “It can’t hurt! It’s safe!”

Our Genetic Guns

My dad had advanced dry AMD/geographic atrophy. My husband’s mother had AMD, but we’re not sure of the type. Neither of us have AMD – yet – but research has shown that we each have a higher risk of it than someone with no family history. We each have additional risk factors as well.

There’s another disease for which we both have an inherited risk factor: Alzheimer’s Disease. My mother had it. We think my husband’s mother had it as well, although it may have been another form of dementia.

In memory of Harry & Genevieve Chernek and Elizabeth & Jacob Moore

I’ve shared this quote that’s often used for discussions of genetics:

genetics loads the gun, lifestyle pulls the trigger.

What does that mean? It means that a person may have a specific genetic makeup that predisposes them to a disease, but lifestyle factors DO matter. They can prevent the expression of the genes or can lessen the impact of them.

With family histories of AMD -and- Alzheimer’s, our guns are loaded!

We are COUNTING on those lifestyle factors! I’m 68 and my husband is 70. There’s a third risk factor: age. They’re both age-related diseases, so our guns are REALLY loaded!

Comments

I’ve been working on this in ‘fits and starts’ since early October, so it’s been almost 2 months. I hope I’ve managed to put together a coherent description of this long process. Because there’s been so much to it, I’ve put the details in the comments (on the Facebook page, that is). Here is an outline, so you can go to what you’re interested in if you don’t want to read the whole story.

Outline

1 The Eyes and the Brain: Same Lifestyle Factors
2 Oxidative Stress and Antioxidants
3 Three (3) Carotenoids, Not Just 2!
4 What Is Meso-zeaxanthin? Why Is It Important? Show Me the Research!
5 Dr. Nolan’s Research: His Questions and Answers
6 Where Do People Get LMZ? My Questions and Answers
7 Time to Get Personal: Are The Moores Getting Enough LMZ?
8 Can The Moores Improve Their Diet?
9 Those of You With AMD: Your Benefit
10 Should The Moores Take a LMZ Supplement?
11 Which Brand?
12 More Validation
13 The Beginning and The End

Comment 1. The Eyes and The Brain: Same Lifestyle Factors

The eyes are actually part of the brain, so it’s not surprising that what benefits the eyes, benefits the brain. If you’re not familiar with the connection between the eyes and the brain, here’s a brief explanation. https://youtu.be/4Na0Mj0b_6A

Lifestyle Factors for the Eyes and the Brain

The same lifestyle factors affect them both. Nutrition and smoking are the main ones. I never smoked, but my husband did but quit 40 years ago.

I started my investigation with nutrition because of our continued struggles with the Mediterranean way of eating, which is recommended for both diseases. We try our best to eat healthy but found that we were falling short of the very specific nutrition advice given frequently.

Not Just Healthy Eating

Years ago I found out that ‘eating healthy’ does not necessarily mean ‘eating healthy enough for the eyes’ and now discovered the same thing applied to eating healthy for the brain! Much more to it!

Comment 2. Oxidative Stress & Antioxidants

In both diseases, oxidative stress is a major factor because research has shown that it leads to inflammation, which leads to diseases such as AMD and Alzheimer’s. I wanted to make sure I understood the terms oxidative stress, free radicals, and antioxidants.

What Exactly IS Oxidative Stress?

Think about an apple that you cut and is exposed to the air. It changes & spoils the apple, doesn’t it? Also, think about what rust is. Both processes are from oxidation, which means something is exposed to oxygen and is changed.

Some people say that since we depend so much on oxygen, aging is just rusting! Lovely image, huh? Soon I’ll be introducing you to Dr. John Nolan who says this is “the cost of doing business with life.”

In the body, oxidation is a chemical reaction in a cell when it is exposed to oxygen. Our retinas use the most oxygen of any cells, so that’s a LOT of oxidation!

In these cells, there can be an imbalance of what are called free radicals (the ‘bad guys’) and anti-oxidants (the ‘good guys’).

Oxidative stress is when the ‘bad guys’ are getting control, which is NOT good! Here’s a short video that explains this.
https://m.youtube.com/watch?fbclid=IwAR2pV_Z35dnfoWxdzx9IXdmQSm9t6MfMR1VAkHCsAkFCQHNlB9b3ks69XS8&v=9OgCjhAFCC0&feature=youtu.be

Oxidative Stress and Inflammation

Oxidative stress can trigger inflammation which is thought to cause dis-eases (yes, I purposefully put in the -) like AMD and Alzheimer’s, or at least it’s thought to be a major factor. For more information about the effects of oxidative stress on the body—> https://www.medicalnewstoday.com/articles/324863#summary

Anti-oxidants

So to battle oxidative stress, we need a good and consistent supply of anti-oxidants (that is ‘anti’ for ‘against’ & ‘oxidants’ referring to oxidation and oxidative stress; I’ll leave out that ‘-‘ from now on).

This 15-minute video is the first part of a Continuing Medical Education course which gives a GREAT explanation of the process and introduces the role of the 3 powerful antioxidants that are critical to protecting and nourishing our photoreceptors, which are the cells that convert light to sight. ‘Macular Pigment Supplementation: A Prescription for Vision and Cognitive Health.’
https://youtu.be/-8n9rz2AmXE

I highly recommend part 2 as well.

Next: PART 2 – THREE (3) CAROTENOIDS, NOT JUST 2!

Personal Message December 11th, 2021 Our Genetic Guns: Part 3

Continued from Part 2

Comment 5. Dr. Nolan’s Research: His Questions and Answers

Perhaps the best way to understand how this research evolved over time is to listen to Dr. Nolan describe it in detail before he joins us on Tuesday, December 14th (see the Events section on the Facebook group’s page). It was this podcast from September 3rd, 2021, that helped me to understand how the researchers started by looking at lutein and then measuring and testing all 3 carotenoids.
‘Age-related Macular Degeneration, Supplementation, and Key Research Findings in the Field of Ocular Nutrition.’
http://broadeye.org/nolan/?fbclid=IwAR29J6lcBxCYHkAGuV8wTfsxD7t6cbnNieWFC8U1wLihlVrcStYcR_0DC0g

The Questions

What’s clear from the podcast is that he approaches all his research as you should – with questions. The basic ones were:

  • Can we prevent eye diseases like AMD by enhancing the macular pigment?
  • By optimizing all 3 carotenoids in the macular pigment, can we improve contrast sensitivity (ability to detect differences in shading and patterns), reduce glare issues, improve photostress recovery (ability of vision to come back to normal after exposure to bright light) and other measures of vision in everyone with or without AMD?
  • Does the measurement of the macular pigment give us an indication of the levels of the carotenoids in the brain?
  • Does enhancing the level of carotenoids in the body prevent a disease like Alzheimer’s?
  • Does enhancing the level of carotenoids in the brain help improve memory and cognition?
The Answers

The answers after 20 years of doing study after study were yes, yes, yes, yes, and yes!

He and his colleagues were able to move beyond subjective measures to objective measures that could be validated and reproduced.

Summary

As far as the research about our eyes, they not only looked at the ‘traditional’ measure of vision which is visual acuity, but objectively measured contrast sensitivity, glare sensitivity, and other aspects of vision. Having sufficient levels of LMZ meant significant improvements in these measures.

As far as research about Alzheimer’s, they not only looked at preventing the disease but at improving memory and cognition.

Understand My Excitement?

I hope you understand why I was so interested in the work he and his colleagues did and continue to do 20 years later!

Onward!

After digging through all the research I could and talking to Dr. Nolan personally to fill in the gaps, it was now time to apply the findings from the research to my life and my husband’s.

Comment 6 Where Do People Get LMZ? My Questions and Answers

So MY big question at this point was:

If we need all 3 carotenoids, can we get them from our diet by eating plant-based foods?

Although we can get enough lutein from plant-based foods, it’s harder to get zeaxanthin and almost impossible to get meso-zeaxanthin because it’s found only in the skin of some fish like trout and shellfish. We don’t eat trout or shellfish.

Somewhere along the line before this project, I’d read that zeaxanthin & meso-zeaxanthin are made from lutein in the body.

There are researchers who believe that the body metabolizes lutein and produces meso-zeaxanthin so as long as we’re getting enough lutein, we are fine.

Dr. Nolan says that he believes that SOME people do produce meso-zeaxanthin from plant foods, but not everyone. He’s done extensive testing of people’s macular pigment over the years and estimates that 15% of the population don’t have optimal macular pigment for whatever reason.

What reasons? Not getting enough lutein? Getting enough lutein, but their body isn’t converting it to meso-zeaxanthin? The ‘jury is still out’ on this, but it may be because of a lack of certain enzymes.

Next: PART 4 – TIME TO GET PERSONAL: ARE THE MOORES GETTING ENOUGH LMZ?

Personal Message December 11th, 2021 Our Genetic Guns: Part 4

Continued from Part 3

Comment 7: Time to Get Personal: Are The Moores Getting Enough LMZ?

How do WE know if we are among those who get enough lutein from our food and make enough meso-zeaxanthin from it? We don’t.

What I understood at this point from the research:

This is big!

This is the key to stopping that genetic gun from firing!

Since we cannot get a measure of our macular pigment, we have to assume it’s not as healthy as it needs to be to prevent both diseases.

Comment 8: Can The Moores Improve Their Diet?

My husband and I have had general concerns about our nutrition for some time:

  • We have trouble finding produce that we’re convinced is nutritious because there are well-documented problems with farming, distribution, and availability.

  • We often don’t get the vegetables cooked properly. Sometimes they are in the refrigerator for too long. Our health issues mean that some days we just don’t have the energy to prepare a healthy meal, even though we have the food.

  • We both have diseases for which we take medications, so we know we don’t absorb nutrients from food as well as someone with no other diseases and who do not take medications.

  • Because of our age, we don’t absorb nutrients as well as someone younger.

Even if we were to try to follow the Anti-AMD Diet that I refer to frequently (see Guide 11), the daily recommendation is to eat 6-7 servings of fruit and vegetables a day: 2.5 cups of vegetables & 2 cups of fruit). A serving is ½ cup cooked, 1 cup raw. The vegetables should include leafy greens, but I’ve not seen any recommendations of the ratio of leafy greens to other vegetables.

That’s a LOT! Do YOU eat this every day? We certainly don’t!!

Comment 9: Those of You With AMD

So far, I’ve shared research that says that having the optimal amount of LMZ in the macula is linked to the PREVENTION of AMD which applies to me, my husband, your kids, your grandkids – those of us with a family history – and your friends and neighbors who do not have AMD or a family history of it.

Want Me To Fast Forward? Sure!

You’d like me to fast-forward, right, to the part where I tell those of you who already have the disease what, if anything, LMZ will do for you?

Relief From the Symptoms

Full disclosure: this is not about slowing the disease – at least we don’t yet know/haven’t proven if having optimal macular pigment reduces the risk of AMD progressing to an advanced stage such as wet AMD or Advanced Dry AMD/Geographic Atrophy. Those types of clinical trials take a LONG time.

We DO know it is about:

  • protecting the photoreceptors from further assault and damage from oxidative stress;

  • improving the symptoms that make vision with AMD problematic: problems with glare and contrast, slow recovery from bright light, slow dark adaptation;

  • protecting the photoreceptors from damaging blue light. Here’s a great video where Dr. Nolan talks to Dr. Kerry Gelb about it. https://youtu.be/wpV4dWd3_80

AREDS2 Formulation Plus Meso-zeaxanthin for Some

What HAS been shown is that for those who are good candidates for an AREDS2-based formulation – those with intermediate dry AMD or with wet AMD in one eye but not the other – adding meso-zeaxanthin DOES improve vision while providing that same reduced risk of progressing to wet AMD found in the AREDS & AREDS2 research.

Dr. Nolan’s CREST Trials

In 2011, Dr. Nolan received funding from the European Research Council to do 2 trials called ‘Central Retinal Enrichment Supplementation Trials (CREST).

Their research question was: if we enrich a person’s macular pigment by giving them LMZ as a supplement, can we improve visual function as measured by contrast sensitivity as the primary endpoint and visual acuity, glare disability, and other measures of vision as secondary endpoints.

CREST AMD (sometimes referred to as CREST 2)

There were 2 CREST trials, but I’m leaving out the details, including those for Trial 1. Dr. Nolan can fill us in about it (and a lot of his OTHER research that I’ve not discussed – there’s just been SO much!).

Trial 2 is called CREST AMD, so they studied people with early AMD. Their primary measure was contrast sensitivity. There were 32 tests in all!

There were 2 treatment groups who both got a supplement with the ingredients from the AREDS2 formulation: Vitamin C and E and 25 mg of zinc, lutein and zeaxanthin.

Group 1 also got meso-zeaxanthin.

You’ll find a good graph in this article that shows the results. The article says, “Patients with AMD would have usually been expected to experience a continued deterioration in their vision throughout the 2 years of the clinical trial. Instead, those receiving carotenoid supplementation showed a significant improvement across 24 out of 32 tests of vision. Improvements in vision were particularly marked among those patients receiving all three carotenoids (group 1) compared with those receiving only Z and L (group 2). Of note, 34.8% of trial participants who received all three carotenoids had what is deemed to be a clinically meaningful improvement in their vision after 24 months, compared with 19.6% of patients on the AREDS2-like formulation (see Figure 1).”

‘CREST AMD Trial: Vision Improvement Among Patients with AMD Who Consume Xanthophyll Carotenoids’ https://www.optometricmanagement.com/newsletters/nutritional-insights-for-clinical-practice/may-2018

What If Your AMD Is Beyond the Early Stage?

It’s not been studied, I’m sorry. However, since we know that LMZ protects the macula from further damage from oxidative stress and from further damage from blue light and has proven to reduce symptoms of glare and contrast sensitivity, improves dark adaptation, and improves photostress recovery, I think it’s safe to assume it will have a positive effect for you, too!

It’s Also About Alzheimer’s

No matter what stage AMD you have, LMZ also reduces your risk of developing Alzheimer’s Disease. Every time there’s an article about the link between AMD and Alzheimer’s Disease, it causes quite a stir.

The connection isn’t between AMD and Alzheimer’s: it’s the connection between the eyes and the brain!

Next: PART 5 AND FINAL-COMMENT 10: SHOULD THE MOORES TAKE A LMZ SUPPLEMENT?

Should I take eye vitamins? What’s AREDS2?

QUESTION: Should I take eye vitamins? What’s AREDS2?

(Updated October 2022)

This only applies to those with Age-related macular degeneration (AMD or ARMD) not any other form of macular degeneration (MD).

This is NOT medical advice. It is information for you to use:
– to do your own research
– to ask questions of your eye specialist
– to ask questions of your medical doctor.

The Basics

1. What is AREDS and AREDS2?

They are NOT brand names.

AREDS stands for Age-Related Eye Disease Study. There were 2 studies: AREDS results released in 2001; AREDS2 results released in 2013.

2. What was the purpose of the studies?

The purpose of these studies was to see if a specific combination of vitamins and minerals would slow the progression of AMD to the advanced forms of wet or advanced dry/geographic atrophy. They were both conducted by the US National Insititute of Health (NIH) National Eye Institute (NEI). The Bausch & Lomb company provided the formulations & financially supported both studies. Click here to read the information provided by the NIH NEI about AREDS and AREDS2.

3. What were the formulations?

Both studies used 500 mg of Vitamin C and 400 IUs of Vitamin E. In the first study (AREDS or AREDS1), they used 15 mg of beta carotene, a carotenoid. When research showed a connection between beta carotene and lung cancer in smokers and former smokers, beta carotene was removed in AREDS2 and replaced with 2 other carotenoids: 10 mg of lutein and 2 mg of zeaxanthin.

Both studies included zinc: AREDS used 80 mg of zinc. In AREDS2, there were 2 groups, one with 80 mg of zinc and a second with 25 mg of zinc. Both groups had the same posotive results, but because AREDS2 did not have a true placebo group, the NEI says that the ‘gold standard’ for the formulation includes 80 mg of zinc. Because zinc removes copper from the body, copper was included: 2 mg of copper with 80 mg of zinc, 1-1.2 mgs of copper with 25 mg of zinc.

Bausch & Lomb has the patent to both the AREDS & the AREDS2 formulations with 80 mg of zinc. Because of that, their PreserVision products are the only ones with 80 mg of zinc. After AREDS2 results were published in 2013, many companies marketed their ‘AREDS2-based’ products with the same formulation but with 25 mg of zinc.

4. Who in the studies did they help?

They were effective in slowing down the progression to wet AMD (but not geographic atrophy) for some people with:

a) intermediate dry AMD.
b) wet AMD in one eye but not the other.

5. What about the rest: those who do not have AMD, have early AMD, have wet AMD in both eyes or have another form of macular degeneration such as Myopic Macular Degeneration (MMD) or Stargardt’s Disease (SD).

a) They were NOT tested on those who do not have AMD or have wet in both eyes.

b) They were tested on those with early AMD in AREDS but not AREDS2 because they showed NO benefit in the 6+ years of the study.

c) They’ve NOT been tested on those with another form of macular degeneration.

6. What’s the harm taking them if they weren’t tested on people like me?

Some of the ingredients are high doses. There’s been no research on whether taking them if you don’t need them is safe or effective. Would you take a blood-pressure-lowering medication if you did not have high blood pressure?

7.  What is the controversy about zinc in AREDS and AREDS2?

A 2018 study using the genetic profiles of some of the participants of the AREDS study (the first one where 80 mg was used) found that for 15% of the people with a specific genetic makeup (I call it being ‘zinc sensitive’), their AMD progressed faster than those in the study with a different genetic makeup.

8. I’ve heard not everyone agrees with those findings. What’s up with that?

This finding has been disputed by the NIH NEI researchers involved in the AREDS and AREDS2 research. The NEI, some eye specialists, and the AAO (American Academy of Ophthalmologists) take that side and say that genetic testing is NOT necessary because there is no difference in effectiveness of the 80mg of zinc based on genetics.

The opposite view is taken by the researchers involved in the 2018 and prior research. The genetic testing they used in that study and previous studies is available through your retinal specialist by the ArcticDX company.

9. My stomach hurts when I take PreserVision. Why would that happen?

The National Institute of Health’s Office of Dietary Supplements says that the upper tolerable limit of zinc is 40 mg.  According to their page, some of the signs of too much zinc are “nausea, dizziness, headaches, upset stomach, vomiting, and loss of appetite. If you take too much zinc for a long time, you could have problems such as lower immunity, low levels of HDL (“good”) cholesterol, and low copper levels. Taking very high doses of supplemental zinc can reduce your body’s absorption of magnesium.”

References

AREDS Results. ‘A Randomized, Placebo-Controlled, Clinical Trial of High-Dose Supplementation With Vitamins C and E, Beta Carotene, and Zinc for Age-Related Macular Degeneration and Vision Loss’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1462955/

AREDS2 Results. ‘Effect of Omega-3 Fatty Acids, Lutein/Zeaxanthin, or other Nutrient Supplementation on Cognitive Function: The AREDS2 Randomized Clinical Trial.’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5369607/

 


go back to frequently asked questions

AREDS/AREDS2: One Bite at a Time – Bite 2

Continued from BITES

Scientific Evidence From the AREDS & AREDS2 Studies
AREDS
  • Which participants in the AREDS study benefited?
    • Only those with intermediate AMD or those with advanced AMD in one eye but not the other eye were less likely to progress to advanced AMD – only the wet AMD – than patients who received a placebo over the 7-year study period.
    • They did not protect from advancement to dry advanced AMD called geographic atrophy.
    • They did NOT find any significant reduction in risk for those with early AMD.
    • The participants who did not have AMD were in a section of the study on cataract formation not the AMD part of the study.
  • The numbers:
    • 25% less likely when they took the antioxidants (Vitamin C, Vitamin E, Beta Carotene) and 80 mg Zinc.
    • 17% less likely when they took just the antioxidants, no Zinc.
    • They did NOT find any significant reduction in risk for those with early AMD.
    • The participants who did not have AMD were in a section of the study on cataract formation not the AMD part of the study.
  • What became the PreserVision formulation from the study that became available in 2001? 500 mg Vitamin C, 400 IUs Vitamin E, 80 mg Zinc, 2 mg Copper (because of the zinc) and 15 mg beta carotene.
AREDS2
  • Which participants in the AREDS2 study benefited? Just like in the AREDS study:
    • Only those with intermediate AMD or those with advanced AMD in one eye but not the other eye were less likely to progress to advanced AMD – only the wet AMD – than patients who received a placebo over the 7-year study period.
    • They did not protect from advancement to dry advanced AMD called geographic atrophy.
    • There were no participants who did not have AMD or who had early AMD.
  • The numbers:
    • It’s not easy to break down the results as was done above for AREDS.  There was no placebo group so everyone in the study got some kind of treatment.  The groups who had the most benefit took the AREDS formulation of 500 mg Vitamin C, 400 IUs Vitamin E but without beta carotene (high risk of lung cancer). Lutein & Zeaxanthin were substituted.  There were 2 groups who took this formulation but different doses of zinc: one group got 25 mg of zinc and one group got 80 mg zinc.  Both groups did equally as well.
    • There were no participants in the group who had early AMD because the previous study (AREDS) did not find any benefit for them.
  • What became the PreserVision formulation from the study that became available in 2013? 500 mg Vitamin C, 400 IUs Vitamin E, 80 mg Zinc, 2 mg Copper (because of the zinc), 10 mg lutein, and 2 mg zeaxanthin.

Next: Are There Risks to Taking AREDS/AREDS2?

AREDS/AREDS2: One Bite at a Time

First, we need to talk about how AMD starts and progresses. Also, I’ll introduce some terms about the AREDS/AREDS2 supplements.

We cannot tell you if you should take the AREDS/AREDS2 supplements. We can only give you the information for you to make an informed decision.

Facts about AMD – for more information, watch this 4 minute video.
  • Everyone’s rate of progression of AMD is different. There are many risk factors, and everyone has a different combination of them. If the risk factors were letters of the alphabet, you may have A, C, F and Z. Another person may have A, R, and T.
  • I used the letter A in both examples because we all have a genetic makeup which in determined partly by heredity but includes other genetic factors as well such as gene mutations. For a simple explanation of genetics, read The Basics of Genes and Genetic Disorders.
  • Genetics plays a big factor in AMD. In a large study of twins including elderly twins, they reported that “Genetic factors play a substantial role in the etiology of AMD and associated macular characteristics, explaining 46% to 71% of the variation in the overall severity of the disease. Environmental factors unique to each twin also contribute to the occurrence of this disease.”
  • Although having a first-degree relative with AMD (parent) increases a person’s risk of developing AMD, not everyone whose parent has or had it will also develop it.
  • Risk factors are NOT causes.  A risk factor is something that increases the likelihood of a disease to develop. A cause is something that if it is there, you have the disease. We know some of the risk factors for AMD, but we don’t yet know the cause.
  • Everyone who has AMD started with the dry form. Some people don’t get diagnosed until it has turned to the wet form.
  • The dry form usually progresses slowly, but that is not always the case.
  • The stages of AMD are early dry, intermediate dry, advanced AMD which can be wet or advanced dry which is called geographic atrophy.
Basics of AREDS/AREDS2 Research – for more information about AREDS & AREDS2, read this article.
  • AREDS stands for Age-Related Eye Disease Study.
  • There were 2 studies: AREDS ran from 1992 to 1999 (7 years). The results were published in 2001. There were 4,757 people enrolled ages 55-80 years old (mean age 69), 56% were women, 96% were white. DNA was collected. The study was conducted by the NEI and funded by Bausch & Lomb.
  • AREDS2 started in 2006 and ran for 5 years. The results were published in 2013.  There were 4203 people enrolled in the study, ages 50-85 (mean age 74), 57% women, 97% white. The study was conducted by the NEI and funded by Bausch & Lomb.
  • There is only 1 brand of an AREDS or AREDS2 supplement that has the exact formulation as was used in the study: Bausch & Lomb’s PreserVision because they hold the patent.

Next:  SCIENTIFIC EVIDENCE FROM THE AREDS & AREDS2 STUDIES


Scientific Articles for AREDS & AREDS2

AREDS results:  Randomized, Placebo-Controlled, Clinical Trial of High-Dose Supplementation With Vitamins C and E, Beta Carotene, and Zinc for Age-Related Macular Degeneration and Vision Loss

AREDS2 results: Effect of Omega-3 Fatty Acids, Lutein/Zeaxanthin, or other Nutrient Supplementation on Cognitive Function: The AREDS2 Randomized Clinical Trial

Other References

The US Twin Study of Age-Related Macular Degeneration: Relative Roles of Genetic and Environmental Influences

Got Milk?

Hi! How are you all? Lin tells me one of the latest developments of interest to the group is research that was just completed in Dublin and Alabama and reported by Healthline and other sources. They have found calcified eye spots linked to the progression of Age-Related Macular Degeneration. According to the article, there is a six-fold incidence of progression to advanced AMD in those who have the calcification as compared to those who do not.

Now linkage – or correlation – does not mean the factor causes the condition. I have said dozens of times “correlation does not mean causality”. But with that said, it seems something is going on here.

As far back as 1997 (Characteristics of Drusen and Bruch’s Membrane in Postmortem Eyes with Age-Related Macular Degeneration, Spraul and Grossnikulus), there has been evidence to suggest calcification and fragmentation of Bruch’s membrane have something to do with the progression of AMD. And that would be especially wet AMD by the way.

We have also known for a while that drusen are made up of lipids, minerals and protein. Because of the recent research, we now know hydroxyapatite in drusen suggests progression to advanced AMD. What is hydroxyapatite? It is the main inorganic material in tooth enamel and bone. It has calcium and phosphate in it. In short, we need it. No calcium and phosphate in our bodies and our bones become extremely brittle. That is EXTREMELY brittle.

Why is this stuff going to our eyes and not into our bones? It does have other uses in our bodies, but for my purposes here, my answer is I have no clue. Ask your doctor.

Throughout the article (as well as some other articles I scanned) it was suggested this discovery may someday help people to find dietary answers to AMD. That is a huge emphasis on someday folks. No one is ready to tell you to limit calcium and phosphorus.

In the Healthline article on calcification, it was reported that while 99% of the calcium in your body is generally in your bones and teeth where it belongs, some disorders may cause it to go to other locations. These causes may include infection, calcium metabolism disorders, genetic or autoimmune disorders and/or persistent inflammation. (If I had to buy the proverbial pig in a poke on this one, I would go with one of the last two options, but, again, what do I know?)

The Healthline article goes on to report researchers have not found a link between dietary calcium and a higher risk for calcium deposits. That apparently means my lifelong love affair with milk and ice cream is safe for now. Phew! [Lin/Linda: the title Got Milk? comes from the past campaign run by the California Milk Processor Board.]

Preventing calcification may initially involve nothing more than asking your doctor for regular blood tests checking your levels. Too high? Check your medications first. Cholesterol, high blood pressure and hormone replacement medications can mess up the way calcium is used in your body. Stop taking calcium-loaded antacids and have your kidney and parathyroid functions checked. Those can be factors as well. Lastly, STOP SMOKING! Smoking is associated with increased calcification in your heart and major arteries. It may not be putting calcium in your eyes, but if you die of a heart attack, that is a moot point.

Finally, listen to your doctor. None of us is getting any younger. Many of us are dealing with snafus in multiple systems. If your doctor says you need extra calcium, take the blankety-blank extra calcium! The current research on drusen is preliminary at best and should not interfere with the treatment of other conditions.

Bye! Take care! Remember my research skills come cheap, as in free. Keep those cards and letters coming!

Written November 11th, 2018

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Sue on Assignment: CBD Oil

Here we go again! Some of you have been asking about the effectiveness of CBD oil. That means I have an assignment. Off to the research!

Once again I did not have any luck on clinicaltrials.gov. I searched age-related macular degeneration + CBD oil and got pretty much nothing.

Well, not totally true. I found a study that was about age-related macular degeneration and POT 4. Wrong POT though. POT-4 was the original designation for APL-2. APL-2 is a reformulation of POT-4. [Lin/Linda: since the time that Sue wrote this, this entry went away. Can’t find anything like POT-4.]

For the uninformed – like I was – CBD oil is cannabis oil. You know cannabis, pot, marijuana, weed, grass, reefer. Call it what you will, it is all marijuana. Only CBD is the non-psychoactive part of the marijuana plant. In other words, no high, no mellow, no munchies.

Looking for CBD by itself on clinicaltrials.gov I found 55 studies. Most of them were dealing with movement disorders and cognitive dysfunctions. There was not a one that dealt with retinal disease.

Then off to Google Scholar. Not much luck there either. I found an abstract on a “study” that compared dark adaptation in Jamaican fisherman (oops! I forgot ganja, man, ganja another synonym!) before and after using a tincture of marijuana. The study also looked at Moroccan fisherman who were using kif, a marijuana and tobacco mixture.

I put the word study in parentheses because they looked at a total of four subjects. They also did not appear to control for the quality of the cannabis. In addition, there did not appear to be any statistical analysis. All in all, it sounded like somebody had two, fun field trips. They came back with great photos (I hope) and the start of an idea for some real research.

So, if there is no scientific proof, why all the interest in CBD oil? Well, if you go to the general sources on the web, you find a lot of claims being made for cannabis oil.

The article in Medical News Today (July, 2018) tries to separate the truth from the hype. It quotes several sources as saying CDB has many benefits in the body. With cannabinoids receptors in the brain, those 55 studies being done on movement disorders and other brain functions make sense.

The article also reported there are cannabinoid receptors in the immune system. CBD has been found to reduce pain and inflammation in mice and rats. The article goes on to say how CBD oils have been proposed as potential treatments for things like seizures, cancer and even acne.

However, nowhere in the article does it say CBD oils have been proposed or used for the treatment of age-related macular degeneration. There are no references to vision, the eye or any related terms.

I found some articles making those claims, but they were all anecdotal reports. You know, testimonials from someone’s great aunt Tillie saying how she used CBD oil and was cured. Those things remind me of my father trying to make me believe rubbing a raw potato on a wart and burying it during the full moon would make my wart go away. He swore it worked for him as a kid but he was a sample of one. Not scientific.

I like to withhold judgment on these sorts of things until there is scientific proof. Study and replication study in human subjects. So far that has not happened with CBD oil and AMD. Maybe soon, but not now. CBD oil is not a proven cure or even a treatment for age-related macular degeneration or any vision-related problem.

Written October 21st, 2018

Lin/Linda: I recommend that you read this WebMD article that points out the possible risks of taking these products: CBD Oil: It’s all the rage but is it safe and effective?

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Article: Beyond the tip of the iceberg – AMD and nutrition – Part 2

by Dr. Rohit Narayan is a therapeutic optometrist based in the Midlands in England. October 27th, 2018

Layer 2 – Those with early dry AMD

Dr. Narayan says, “In AREDS, only 1.3% of participants with early AMD as shown in figure 2 progressed to late AMD within five years. The AREDS demonstrated that there was no statistically significant evidence of a benefit in delaying the progression of eyes with early AMD to more significant drusen-related pathology (intermediate AMD) through the use of antioxidant vitamin and/or zinc supplementation. ”

“This review highlights the multifactorial influences of diet and food intake on the incidence and progression of AMD. As diet is a modifiable risk factor for AMD, improvement to diet and food intake. coupled maintenance of a healthy body mass index, healthy diet, physical activity and stress management should be encouraged.”

Approach for this group:

“There is the challenge for patients in this group to obtain the nutrients they need from their daily life. If they smoke or acknowledge a poor diet and lifestyle, then taking a supplement may be beneficial in a general way.

In summation:

  • The progression from early to advanced AMD within five years occurs in just over 1% of patients.
  • Specific studies on how the risk of progression in mild AMD is influenced by diet and lifestyle are few, but several population studies show benefit for overall risk.
  • Taking the pragmatic approach, all that we would say to someone to keep their eyes healthy can be applied here – smoking cessation, advice on sun protection.
  • Adopt a healthy lifestyle: a healthy body mass index, healthy diet, physical activity and stress management.
  • The highlights of the population studies are summarised in table 3 below.
  • College of Optometrists Leaflet ‘Healthy lifestyle, healthy eyes’.
  • There is no evidence to support the use of high dose antioxidant vitamin and mineral supplements for patients who have less than intermediate AMD.
Table 3: Recommendations on dietary intake

Next: Layer 3 – Patients with a family history

Resveratrol: Safety and Efficacy Not Yet Proven for AMD

Back again. This time Lin asked me to research resveratrol. Back to the trusty web and clinical trials.gov!

My first search for resveratrol and AMD turned up one citation. There is a phase 1 – safety and tolerability – study being conducted in France. Resveratrol for Exudative Age-Related Macular Degeneration is not due to be completed until summer, 2019. We will have to wait for that one.

So back to clinical trials.gov for resveratrol alone.  That search yielded
148 studies. We are talking about a pretty wide range. They are studying everything from obesity to COPD to endometriosis. I will admit I only read a few dozen titles but none of those had to do with eyes.

Next came a general search and I actually hit something! The only problem was these studies never got into human trials.

Retinal Effects of Resveratrol in US Ophthalmic Review, 2013, reported resveratrol prevented activation of inflammation pathways and was a potent scavenger of reactive oxygen species and free radicals. It reduced angiogenesis (formation of new blood vessels) in a MOUSE MODEL.

There were three or four others I found that had gotten promising results for angiogenesis. They were all mouse models.

The bottom line on that part of my search is this: unless you are a mouse, the results do not apply to you.

What I found sort of odd was these promising, preclinical trials were done around 2010. With a rather cursory search, I did not find any replication studies and nothing got into clinical – human – trials. Or at least I did not find any.

So what is resveratrol? Once again we are looking at red, blue and purple fruit. Resveratrol is a naturally occurring plant polyphenol and is primarily found in grapes.  It is the principal, biologically active ingredient in red wine. Now we are talking! The article, Resveratrol and Ophthalmological Disease published in Nutrients 2016, goes on to talk about how resveratrol has been found to be protective and to have “anti-aging effects”.

Wonder how much red wine would one have to drink for the anti-aging effects? ?

Anyway, somewhat long article so I concentrated on the section on Age-Related Macular Degeneration.  The article quoted promising results found in vitro. That means in glass, meaning a sample dish, not real, human eyes.  The authors admitted there is limited evidence for the antioxidative effects in vivo, that is in life.

One more time, caveat emptor. A Nature.com review of all of the potential uses of resveratrol suggested the supplement’s therapeutic efficacy varies across a variety of factors. For example, it may help with some cancers but not others. It may help with cardiovascular disorders in some demographics but not others. There wasn’t enough objective data on AMD for it to even make the list!

To conclude, while there is evidence resveratrol – like other substances in red, blue and purple fruits – has anti-inflammatory and antioxidant effects, there are currently NO, that is NO research data substantiating claims it is helpful in reducing the formation of new blood vessels in eyes. Unless, of course, you are a mouse. There is no information saying conclusively how much you must take to support eye health. As with everything medical, we recommend you consult your doctor before trying any intervention

Written October 17th, 2018

** Always talk to your doctor before you take ANY supplements ESPECIALLY if you are taking medications including other supplements, and you have health issues. If you have low blood sugar or are taking blood thinning medications, read the entire page, please. Self-treating any eye condition and avoiding or delaying standard care may have serious consequences.

Concerns

There are side effects and medication interactions for resveratrol including it being something that thins the blood.  For a complete list of concerns, side effects and drug interactions, click here.

Go back to the list of “On Assignment” pages

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Sue On Assignment here! I am back with the second thing from the list Lin gave me.

This one is bilberries. Now once again, I was not truly sure what I was researching. It wasn’t a huge intellectual stretch to figure out a bilberry is a berry. But what exactly is it?

WebMD suggests there are bilberries in Great Britain. It appears they make a great jam. Supposedly bilberry jam helped the allies win the war. Bombers needed good night vision.

So, back to what is it anyway? The bilberry is a small, bluish-purple berry related to the cranberry, the huckleberry, and the American blueberry. It’s a really good family. Every member of the family carries a lot of anthocyanosides.

And what, pray tell, is an anthocyanoside?  It is a flavonoid. Now I know as much as I knew before!  Dig deeper, Sue.

A flavonoid is a one of a group of plant metabolites that has been thought to have anti-inflammatory and antioxidant properties. It has been suggested that flavonoids can be good for our bodies and help protect us from many diseases caused by inflammation and oxidative stress. Of course, one of these diseases would be Age-Related Macular Degeneration.

Flavonoids have antioxidant and anti-inflammatory properties.  Anthocyanosides are flavonoids and bilberries have anthocyanosides. I looked at clinicaltrials.gov and there was nothing on bilberries and AMD. I then searched for anthocyanosides and AMD. Still zip.

Then I just searched clinical trials.gov for anthocyanosides or bilberries alone and got a number of hits.  107 to be exact. A lot of them were on related or kinda related topics (brain health, diabetes) but I decided to look at only the ones that were related to vision.

The first article that matched anthocyanosides was Blueberry Effects on Dark Vision and Glare Recovery. Note: that is blueberry. The abstract indicated that neither dark adaptation nor night vision were improved by anthocyanin intake. Photobleaching recovery was faster but the researchers were not sure the difference would be enough to affect everyday visual functioning.

The second article was Efficacy and Tolerability of a Bilberry Extract in Volunteers with Impaired Twilight and Night Vision.  Results suggested there was significant improvement in contrast vision and visual acuity.  However, the researchers then wrote “the two significant treatment effects observed probably occurred by chance”. There were no significant differences in night vision.

The last study I found in clinical trials.gov was  Effects of a Standardized Bilberry Extract in Improving the Night Vision of Healthy Volunteers. Clinicaltrials.gov did not have it marked completed nor could I find a published article. Another study that went “poof” it would appear.

The takeaway message on all this appears to be nicely summed up in the takeaway message section of verywellhealth.com’s article Bilberry for Eye Health. To quote: There is still not enough scientific support for the use of Bilberry for eye conditions…..consult your physician”.  [Lin/Linda: I’m going to quote more from this article below.  It’s about side effects.]

That said, there appears to be more promise for bilberry extract and other fruits containing  anthocyanosides than there was for astaxanthin, for example.  Lots of people are experimenting with the substance for a wide variety of conditions. If that many researchers are looking, there might be something there.

And one more note on this: there are at least a  dozen anthocyanoside sources they are experimenting with. Everything from cherries to raspberries to blue potatoes. Shop around. Most blue and purple fruits have flavonoids and something other than bilberries might fit your budget better.

Written October 13th, 2018


From verywellhealth.com’s article Bilberry for Eye Health:

Side Effects

Bilberry fruit is generally considered safe for most people when the fruit is consumed in typical amounts in food. Little is known about the safety of bilberry in supplement form, particularly when taken regularly or in large doses.

There’s some concern that bilberry extracts may lower blood sugar levels. You shouldn’t take bilberry supplements within two weeks of a scheduled surgery.

Keep in mind that self-treating any eye condition and avoiding or delaying standard care may have serious consequences.


Another article from HealthDay about bilberry:

It may be good for your eyes. Researchers believe that bilberry may improve retinal lesions due to diabetic or hypertensive retinopathy. Others speculate that bilberry may help prevent disorders such as macular degeneration, cataracts, and glaucoma, all of which can rob you of your eyesight as you age. More research is needed in this area.

and

How safe is it?

In Europe, bilberry extract is the active ingredient in a number of over-the-counter and prescription drugs; no toxic effects have ever been reported. However, its compounds can inhibit blood clotting, so don’t use it if you’re already taking medication to thin your blood. Remember, too, that impaired vision or eye disease of any kind is a serious condition and should be discussed with a medical professional. If you’re considering using bilberry supplements or you’re concerned about your vision, tell your doctor. It’s also important to know that bilberry leaf and bilberry leaf extract is toxic in high doses. It’s best to stick to the fruit, but if you take a supplement, be careful not to overdo it.

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Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Here I am again. Back on assignment. Lin gave me a long list of things you have been asking about. Research? I’m game! I wrote enough therapy notes for one day.

The first one I chose was astaxanthin. I frankly had no idea what it is but naturaleyecare.com and Tufts University’s Health and Nutrition Letter enlightened me.

The first thing I learned about astaxanthin is that it is the stuff that turns flamingos pink! How cool is that? Microalgae containing astaxanthin are eaten by shellfish, the shellfish are eaten by the flamingo and -voila! – pink birds.

Now you know how that happens. (We always aim to educate ?). What does astaxanthin have to do with Age-Related Macular Degeneration?

Excellent question. I have to admit. Astaxanthin sounds crazy promising in the naturaleyecare.com article. It is a carotenoid, related to beta carotene. Carotenoids are antioxidants. Those are the things that fight the oxidative stress in our eyes (and other places). It keeps those nasty free radicals from rattling around in our cells like the proverbial loose cannons and doing tons and tons of damage. Astaxanthin is supposed to be a particularly strong antioxidant and to do great things. [Lin/Linda: you can find TONS of websites & webpages that give big claims. Of course, we expect you to do your own research but please watch out for those websites where products and services are being sold. They’re big on claims but short on research of those claims.  Remember, a testimonial is NOT scientific evidence.]

If something is so promising there should be lists of research articles as long as my arm. Drug companies should be clamoring to put this stuff in a pill, patent the formula and sell it. Right? Apparently wrong.

I searched clinicaltrials.gov and found one study. This study – Drusen Morphology Changes in Nonexudative Age-Related Macular Degeneration After Oral Antioxidant Supplementation – was started in October 2014. That was four years ago. There were no further entries about the study on clinicaltrials.gov and I could not find an actual journal article. Unless it is only in Spanish and I am missing the citation, I don’t think the research was ever done. It does not appear to be listed in his completed and published research. I think. My Spanish is fairly non-existent.

Obviously, I looked up the researcher. His name is Xavier Valldeperas. He practices and teaches at a university hospital in Badalona, Spain. Researchgate.net says he has 31 research articles published with 165 citations in other people’s work. In other words, he is not a lightweight. Why would he give up promising research? Dunno. Not actually sure he did.

In other words, I am thinking the good doctor looked at some preliminary results and gave it up. I don’t think the data were there. Forgive me for being a killjoy and a spoilsport, but I do not think astaxanthin is a “miracle cure”. Sorry. I know I am a party pooper, but this seems to me to be what happened.

That said, it does not appear astaxanthin is going to hurt you. WebMD lists it as likely safe when consumed in foods and possibly safe when taken as a supplement. There is just no clinical evidence it is going to help with AMD. [In this WebMD article under dosing, it says, “The appropriate dose of astaxanthin depends on several factors such as the user’s age, health, and several other conditions. At this time there is not enough scientific information to determine an appropriate range of doses for astaxanthin. Keep in mind that natural products are not always necessarily safe and dosages can be important. Be sure to follow relevant directions on product labels and consult your pharmacist or physician or other healthcare professional before using.”

Bottom line? Caveat emptor. Conduct your own experiment if you wish. Take your astaxanthin but I ask one favor: if you turn pink, would you send us a picture??

Written October 10th, 2018

Lin/Linda: here’s an article shared in the Facebook group “Neuroprotective mechanisms of astaxanthin: a potential therapeutic role in preserving cognitive function in age and neurodegeneration.” However, this is not an article about the safety and effectiveness for macular degeneration.  Several other articles were referenced with big claims that astaxanthin can do amazing things for everything from wrinkles to cancer, but they all were on websites where proprietary products were being sold. We don’t consider those to be sufficient evidence for the effectiveness and safety of astaxanthin.  Many of these articles that promote products make claims such as “this substance has been shown to help with oxidative stress and since oxidative stress is connected to AMD, then the substance will help AMD.” That’s not scientific evidence.

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Sue on Assignment: How to Conduct an Experiment for Yourself

Lin sent me a copy of the WebRN-Macular-Degeneration News “article” (read advertisement) for Saffron 20/20. I did not know whether to laugh or to scream.

Oh, they were very careful. Nowhere in there did they say “cure”. Nowhere did they say “proven”. They did not even get a toe across the line and use the word “treatment”. All they did was ask why we should not listen to “regular people” just like me and you. Very clever.

I enjoy seeing clever manipulation. The art of the con is time-honored in America and Great Britain and probably a couple of thousand other places. P.T. Barnum opened a museum that was so popular people would come and stay all day. There was no room for any more paying customers.

Barnum solved the problem by putting up a sign saying something like “This way to the amazing egress!” It was only when they were standing on the sidewalk outside the building that they figured out egress is another word for exit! People just followed along.

The word shill is thought to come from the British word shillaber. A shill is a plant. He is the “lame” guy at the medicine show who ends up dancing the jig. He amazes people into buying the snake oil potion.

In other words, never trust testimonials. You just might end up going to see the egress!

That said, I use turmeric every day. Someone told me it would help with my rotator cuff tendonitis and I decided it couldn’t hurt and it just might help. I also started using a muscle rub and tying my arm to my side when I slept. The better not to sleep with it above my head, my dear. Something worked. I have no clue which change it was, but it worked.

Remember how I parrot my father and say do as I say, not as I do? This is another instance of that. I have gone about this turmeric thing totally WRONG. The turmeric people may have me buying something worthless because a yoga acquaintance said it works.

Although I trust the girl who told me about turmeric, she may have sent me to see the egress.

What should I have done? How to Properly Self-Experiment with Supplement, Herbs and Functional Foods is an article outlining how it is done.

First of all, the author suggests you do your research. Is there evidence this stuff may work? In my case, yes, turmeric is a known anti-inflammatory. But after that, I went off the rails.

I didn’t change one thing at a time. I changed three! Wrong! I never researched dosage. Two in the morning and two in the evening seemed right. I also never kept track of my progress. No pre- or post-testing. I failed scientific method 101.

Testimonials, anecdotal evidence, are not “bad”, but they are not the complete truth either. At best, they are not much more than a hint of what might be true. At worst, they are a purposeful con.

If you want – and it will not cost you much in time, money, and perhaps even more importantly, in misplaced faith – go ahead and try things “real people” endorse. But do it wisely. Follow the guidelines in the article, not the guy who tells you the egress is amazing.

Written September 30th, 2018

Next: More Sue on Assignment coming soon!

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Sue on Assignment – Special Topics

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her.  I’ve also gotten requests from readers.  If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Mitochondria – Part 1 (2 pages)

Photobiomodulation

Why Read My Pages? My Answer

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Linda on Assignment

Me and My Cocoons – 2 pages

Electronic Glasses for Low Vision – SeeBOOST

Headworn Low Vision Glasses and Goggles – 2 pages

 

More to come!

Have an idea for a page for Sue? Let me know at light2sight5153@gmail.com

Sue on Assignment: AREDS2 Study & Geographic Atrophy – Page 2

Hi! Back with trying to understand the last, three pages of the article “Progression In Geographic Atrophy in Age-related Macular Degeneration”.

It would appear they are having trouble figuring out exactly how these suspect genes are causing the problems they seem to be causing. Like watching a magic show: you know the magician has something to do with what is happening but you cannot seem to figure out how he is doing it!

They have come up with theories, of course. Some people think ARM2 encodes for a mitochondrial protein. Remember the mitochondria are the powerhouses of the cells. Others believe the ARM2 gene has something to do with our old friendly nemesis, the complement immune system.

While in some cases they believe it makes more sense to believe one mechanism is responsible for several lesion characteristics, in other cases they believe there are separate mechanisms at work. And to make matters even more complex, they are thinking the whole thing may work on the “Goldilocks principle.” In other words, certain genes may not necessarily be bad or good. Like the chairs and the porridge, they may have times they are “just right” and highly beneficial for the cell. Other times? Not so much.

In short? Damned if I know and, more importantly, damned if the researchers know either. However, they are hot on the trail of…something.

Right now at this stage of the game, they are collecting knowledge. It may be quite a while until they connect the dots with all of this stuff, but connect the dots, they will. Then we shall see what the picture is.

So, what did I get out of this article? A lot of questions. Like good investigators, right now the researchers are gathering data. The AREDS2 study has made available to researchers thousands of people with AMD. These people are being poked, prodded and scanned in the name of trying to understand the nature of the beast. No clue what they may find but the hypotheses being generated are intriguing. Which one do you think may prove to be right?

Written September 20th, 2018

Next: coming soon!

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Sue on Assignment: AREDS2 Study & Geographic Atrophy – Page 1

I am back on “special assignment”. Lin asked me to try to make heads or tails out of a very scientific article entitled “Progression of Geographic Atrophy in Age-Related Macular Degeneration.” It is report number 16 in the AREDS series.

Me thinks she has more confidence in me than I have, but let’s give it a shot. Just remember, social scientist here. My interpretations are always subject to errors.

The article starts with a description of Geographic Atrophy (GA). As many of us know, GA is defined as discrete areas of cell death (atrophy) that eventually grow and come together to form “continents” of damage in the macula. Part of the definition requires the damage to be such that someone examining the eye can see the blood vessels in the next layer (the choroid).

GA usually starts in the macula but generally does not immediately affect the fovea. The fovea is the “prime” area of the macula where the best seeing is actually done. However, as the disease progresses, the fovea is often also involved.

GA involves scotomata, Greek for darkness. Scotomata are those dark islands in our visual fields and result from the death of the cells in those locations.

I am going to skip the methods sections of this article and go right to results….believe me, it is better for everyone that way?.

Okay…because there is no treatment and no cure for GA, science is presently focusing on trying to slow this train down. Worry about actually stopping it once we buy some time. In order to slow it down, we need to know something about it.

The study first calculated how many of their early AMD subjects either went on to develop wet AMD or went on to develop GA. This gave them some idea what the progression of the disease looks like when nothing is done. Basically, they were learning about the natural history of the disease as well as establishing a baseline.

They did make some interesting, incidental discoveries. For example, noncentral lesions grow faster than central ones. Enlargement of lesions occurred more rapidly if the subject had GA in both eyes as opposed to one eye.

Those of us with certain genotypes may be in worse trouble than others. Those who have risk alleles (half a gene pair) on ARMS2, for example, are potentially destined for faster lesion growth. One CFI at-risk allele is another example. Unfortunately, there are several more.

So, on to discussion! What did they actually conclude? Vision loss from GA was steady over the five-year life of the study. Of those in whom there was no central involvement when they were first assessed, 60% developed central involvement within five years. Up to 30% of the eyes with GA developed neovascular AMD within those five years. This was especially true if the companion eye was “wet.” GA lesions may grow more slowly when they are small and when they are large and more rapidly when they are midsized.

There are some genotypes – once again the infamous ARMS2 – that seem to predict both the formation of lesions and their faster growth. If you don’t have those genes, take up smoking. Smoking continues to be found to be a risk factor for both GA presence and growth.

There are three, more pages to go on this thing but I am above my self-imposed word limit here. Also, it is just about nap time. Take this up again tomorrow!

Written September 20th, 2018

Next: Sue on Assignment: AREDS2 Study & Geographic Atrophy – Page 2

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What Can I Do to Slow the Progression of AMD?

There ARE things you can do to battle AMD. These are the recommendations backed by research. Since we don’t yet know what causes AMD in any individual, we don’t know which of these are more effective than others. We do know that there are many factors that influence the development and progression.

I have included a few self-help tips, too.

These are NOT in any order except for number 1.

Remain hopeful!! There is a lot in the pipeline–>http://www.retina-specialist.com/…/pipeline-update-whats-ex…

1. Don’t smoke. #4 and many others.

2. Risk of AMD is 50-70% genetic, the rest is age and lifestyle factors below. High genetic risk of AMD? Lifestyle factors such as nrs. 3, 4, 5, 6, 7, 11 are important. #4

3. Follow the Mediterranean diet, on the low carb side, esp. low sugar. #4 #1 and others

4. As part of the Mediterranean diet, eat lots of colorful veggies, esp green and leafy which have important carotenoids in them. #4 #1 and others

5. Omega-3 supplementation? If one’s diet is rich in healthy oils, some nuts, and fish such as wild caught salmon, some say supplementation is not necessary. #4 #1 and others

6. Moderate aerobic exercise. #1 and others

7. Drink enough water to stay hydrated. #1 and others

8. Reduce stress. Although it is common to have depression & anxiety when you get the diagnosis (and can recur as you do your research, please seek help if you cannot move past this–especially if you have thoughts of harming yourself. #3 #16

9. Wear sunglasses when outside: polarized, blue block. #9

10. Working on the computer – use built-in screen colors to reduce blue light. There’s no firm evidence that electronic devices give off enough blue light to harm our eyes. It does affect our sleep which is important. #17

11. Maintain overall good health including maintaining a normal BMI, normal blood pressure, normal cholesterol. #4 and others

12. Moderate AMD or wet AMD in one eye but not the other? Take AREDS2 with zinc if you know you are NOT zinc sensitive (genetic test). If you don’t know or know that you ARE zinc sensitive, AREDS2 with no zinc. #2

13. Use an Amsler Grid or other monitoring systems. #5 #7 #8

14. If by using aids in nr. 13 & symptoms indicate that dry converted to wet, get treated with anti-VEGF as soon as possible. The earlier the treatment, the better the prognosis. #6

15. Have your eyes examined regularly (every 6 months advised) by a retinal specialist who is an ophthalmologist who specializes in diseases of the retina; write down your questions and take them to your next visit. #12

16. TIP: If you have vision impairment, find a low vision specialist who is an optometrist who specializes in evaluating vision and recommending low vision aids. There are also organizations and specialists who can advise you as to how to adapt your home or workplace. #13

17. TIP: Make sure you have enough light and provide contrast since AMD decreases the ability to detect contrast and increases the need for light.

18. TIP: Don’t drive if you are not safe to do so, especially those who have blind spots. You may not realize that you HAVE blind spots that could block your ability to see other cars or things along the road. #10


References

#1 Mediterranean diet reduces risk for AMD–>http://www.aoa.org/news/clinical-eye-care/mediterranean-diet

# 2 AREDS/AREDS2: A Guide–>https://mymacularjournal.com/home/guide

#3 Can psychological stress cause vision loss?–>https://m.medicalxpress.com/…/2018-06-psychological-stress-…

#4 Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture–>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749242/

#5 ForeseeHome–>https://www.foreseehome.com/

#6 VIDEO: Registry shows early detection of wet AMD helps patients maintain better vision–>https://www.healio.com/…/video-registry-shows-early-detecti…

#7 KeepSight monitoring tools->http://internationalmacularandretinalfoundation.org/keepsi…/

#8 How to Use the Amsler Grid–>https://www.brightfocus.org/mac…/article/how-use-amsler-grid

#9 How to Choose Sunglasses–>http://www.webrn-maculardegeneration.com/sunglasses-and-mac…

#10 Mailbox or Child with self-test–https://mymacularjournal.com/home/mailbox-child

#11 Macular Degeneration: Frequently Asked Questions–>https://www.brightfocus.org/…/macular-frequently-asked-ques…

#12 Ten Questions to Ask Your Doctor about Macular Degeneration–>https://www.macular.org/ten-questions-ask-your-doctor

#13 How Low Vision Services Can Help You–>https://www.brightfocus.org/…/how-low-vision-services-can-h…

#14 Low Vision Rehabilitation and Low Vision Aids–>https://www.aao.org/…/diseas…/low-vision-aids-rehabilitation

#15 Reflecting on ‘grief’ after losing my vision–>http://www.blindintuition.com/reflecting-on-grief/

#16 Highlight: Is depression following the diagnosis of AMD normal?–>https://mymacularjournal.com/archives/5923

#17 Blue light hastens vision loss? ‘Not so fast,’ —>http://www.aoa.org/news/clinical-eye-care/blue-light-transforms-molecules-?refer=rss

Surprise and Hope by Cliff T.

Cliff T’s Vision Health

…in which I report a surprising, hopeful outcome nearing four years after an ARMD diagnosis.

(first draft composed Thanksgiving weekend 2016; most recently reviewed and reaffirmed 11/9/18)

I offer this 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.”


It has seemed to my wife and me that among acquaintances who have suffered age-related macular degeneration (ARMD) it’s been a one-way street to ever-deteriorating vision, although its rate of progress has varied widely.  That’s been the fate of two cousins, one of whom was declared legally blind several years before his death in 2014, and his younger brother, whose condition (of which I subsequently learned) hasn’t taken such a severe turn despite troubling him for a number of years.  I was diagnosed at age 76 with that affliction in January, 2015 by a local ophthalmologist, whom I visited after deciding either my daily newspapers were cutting costs by skimping on ink, or my decades-old, slow-growing cataracts had developed to the point where for me their black and white pages had become large sheets of grey print on somewhat yellowed paper.  My previous eye exams, performed maybe three years before by a different ophthalmologist, had shown no signs of macular degeneration.  Indeed, retina-scan and visual field images made back then revealed no impairments to my vision whatsoever.  (BTW:  The cataract-clouded lenses were replaced in April and May, left eye then right, of 2015.)

I also was told I have glaucoma during that January, 2015 appointment, which, as with the ARMD determination, had not been mentioned during or following earlier eye exams.  And, my new ophthalmologist described glaucoma as being “strongly hereditary” while claiming ARMD is not.  (Digressing briefly, neither any of my cousins nor I can recall an instance of glaucoma among our shared relatives.  Obvious symptoms, including disturbingly restricted peripheral vision in all directions and still-bothersome discomfort every waking moment, first appeared in my right eye immediately after its lens-replacement procedure in May, 2015.  A subsequent diagnosis of “severe glaucoma” in that eye by a younger member of the same practice in early 2017 later was attributed to likely residual damage stemming from a sports injury suffered more than forty years before during an August, 2017 session with a glaucoma specialist to whom I was referred.)

Maybe a year or more before the 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 everyday 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 somewhat 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 early to mid-November, 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 distressed 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 never was able to make out anything in those lighter disks that could be linked 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 warned 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 opaque 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 reappear briefly 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.

In January 2017, knowing of multiple instances of ARMD in my family, I emailed a version of this text to alert younger relatives that a possibly heritable vision disorder may be lurking among our shared genes.  Many questions come to mind, but one is paramount:  Is the visual suppression of my “blind spots” long lasting?  I’ve found no like case histories, but obviously others are buying that OTC lutein/zeaxanthin combination, so with no clearly stated support I plan to continue experimenting on myself doing what seems to be working.  My cousin was so heartened by my experience he proposed doubling my daily dosage, hoping to alleviate his way more advanced ARMD condition.  Of course, I can’t recommend that or any novel course of action—not even my own, but did wish him well.  I reminded him that what I describe has played out over nearly a year.  It’s not been a quick fix—if it is a fix.  As for me, I’m waiting to see what happens next.

 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 suggest vitamin E and Omega-6 fatty acids, also found in some OTC “eye health” medications, somehow contribute 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.

Finally, might there be a blood test for a lutein and/or zeaxanthin deficiency like that for vitamin D, say, that could indicate whether some form of pre-emptive action against ARMD is warranted?  If there were, perhaps it’d be one people with family health histories that include ARMD should opt for, regardless of conflicting opinions as to its heritability, with the aim of countering or at least delaying the macula-damaging onset of ARMD’s sight-destroying consequences.


*In February, 2017 one of the contrarians said about me to my wife, “He’s one of the lucky ones.”  What am I missing?

You can contact Cliff at ctiedemann4159@wowway.com with any comments or questions.  He also has a more detailed form of this article that you can request from him.

What’s the Difference?

Hello. Spent a good part of yesterday working on getting my Wi-Fi connection back. My friend says she enlists the aid of the archangels and the saints. Supposedly Hilarion is the patron saint of technology. How a guy who, according to Wikipedia, spent his life wandering in the desert has anything to do with my Wi-Fi is beyond me. Of course, Hilarion sounds like hilarious and tech and I are a cosmic joke….

But before things went dark, Lin sent me a list of things the Facebook members thought would be of concern for those newly diagnosed. At the top of the list was the difference between dry and wet AMD.

I am going to tackle this sans references because, well, I think I got it. But, if I don’t, feel free to call me on it.

To begin with, both dry and wet AMD start out as dry. With the drusen accumulating between your retinal pigment epithelial cells and their food source, the RPEs start to die.

http://patient.info/health/age-related-macular-degeneration-leaflet

RPEs? Those are the servant cells to the photoreceptors. The photoreceptors are the cells that change light energy into chemical energy and then into electrical energy so your brain can see. Without their servant cells, photoreceptors died.

The death of cells and withering of a body part is called atrophy. In advanced dry AMD that is pretty much all that happens. RPEs die. Photoreceptors die and we loose part of our vision. Advanced dry AMD is called geographic atrophy (GA) because the pattern of living and dead retinal cells once looked to someone like oceans and continents on a map.

That is GA. It is generally a slow process. Vision loss is mild to moderate. In my inelegant terminology, your macula just sort of rots away. Yippee.

Now, that is not exactly what happens when you develop wet AMD. In wet AMD, the way I conceptualize it, your RPEs and photoreceptors send out messages begging for more supplies. Excuse me! We are dying here! The body responds by building more supply routes. These are blood vessels. However, these new vessels are substandard products and they leak. Those of us with wet AMD have eye bleeds.

Wet AMD is clinically called neovascular. Neo for new and vascular for blood vessels.

Bleeding in and about the retina causes cell death. You lose cells and vision quickly. One of the commandments of AMD is thou shalt not ignore an eye bleed! Wet AMD only happens in about 10% of us but it accounts for about 90% of the severe vision loss in AMD.

Now, treatments. The short answer for dry AMD is there are none. They are getting closer and I am hopefully but right now the answer is still none.

The AREDS/AREDS2 formula has been proven effective in reducing the rate of progression from dry to wet. Ask Lin. She is our expert. AREDS as a topic makes my head hurt. To my knowledge supplements do little to stop the slow progression of dry AMD. [Lin/Linda here: I’ve put some information about this at the end.]

The treatment for wet AMD is anti-VEG-F shots. VEG-F is the chemical messenger that calls for new blood vessels. Shut that guy up and there is less that can bleed. There are several different types of “eye shots”. Some work better for some people. Others work better for other people. Work with your doctors on that.

That is the difference between dry and wet AMD according to me. Hope it helped.

Written March 13th, 2018

For more information, here’s a good place to go: The Science of AMD.  I highly recommend the 2 videos on this page as well as the other information.


Lin/Linda: OK, more about AREDS/AREDS2.  The short answer is that they HAVE been shown to be effective in reducing the risk of wet AMD but only for those with intermediate dry AMD or advanced wet or dry AMD in one eye but not the other.  There is an issue about one’s genetic makeup in regard to taking the high dose of zinc in the original formulation (80mg).  For some people with a specific genetic marker, taking that much zinc can cause one’s AMD to progress FASTER to wet than those without that marker.  More about this at AREDS/AREDS2: A Guide where you can get more about the short answer, a link to a page where there’s “If you have…” which will tell you if the AREDS/AREDS2 supplements have been studied or not for the stage of your eyes & whether they’ve helped, and a link to 6 pages with details about the research that produced these supplements.]

Continue reading “What’s the Difference?”

Advanced AMD (wet or geographic atrophy) in both eyes

Advanced AMD (wet or geographic atrophy) in both eyes

No one with this combination was included in either AREDS or AREDS2.   Some doctors tell their patients with geographic atrophy (advanced dry AMD) in one or both eyes to take the supplement to prevent their eyes from progressing to wet AMD (it’s possible to have geographic atrophy AND wet AMD).


Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.

References

Go back to The Guide

 

 

Intermediate AMD in one eye/advanced (wet or geographic atrophy) in the other eye

Intermediate AMD in one eye/advanced (wet or geographic atrophy) in the other eye

Studied in AREDS & AREDS2: showed reduction of risk of developing advanced AMD over 5 years.


Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.

References

Intermediate AMD in both eyes

Intermediate AMD in both eyes

Studied in both AREDS & AREDS2: showed reduction of risk of developing advanced AMD over 5 years.


Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.

References

Go back to The Guide