macular degeneration, macular, diagnosis Wet AMD – My Macular Degeneration Journey/Journal

AMD: The Disease Process by Amanda Legge, OD

Dr. Amanda Legge (pronounced Leg-ee) is a member of our Facebook group. She’s an Optometrist at the Wyomissing Optometric Center in Eastern Pennsylvania.

I want to summarize AMD as a disease process. I explained this during my Facebook Live talk with Linda on 12/12/2021. I also recommend looking in Guide 2 for “what tests does my eye doctor do to diagnose and manage macular degeneration”. In that post I show what normal retina health and normal OCT looks like in comparison to this post about AMD.

Click on image for larger version.

AMD is a disease of the transport process of nutrients in and waste products out of the macula. Oxidative stress and other factors damages the bottom layer of the retina called the RPE (retina pigment epithelium). The RPE has several jobs, but one of its main responsibilities is to help transport waste OUT of the retina, through the RPE, and into the blood vessels below so that the waste is eliminated then with the rest of the waste our bodies produce. It is also responsible for carrying nutrients from the blood vessels under the macula, through the RPE, and INTO the macula where it nourishes the photoreceptors that are responsible for our vision.

The disease of AMD is a fault of this transport system as a whole. Studies show AMD starts 3-5 years before eye doctors can view this clinically in the macula as drusen. An entire wash of waste deposition already builds between the blood vessels and macula as very early AMD starts (shown in electron biomicroscopy of donor eyes, we cannot visualize this yet clinically). As that waste product builds more and more, eventually eye doctors can see the iceberg peaks of that waste deposition that we call drusen. Drusen look like yellow bumps/deposits in the macula during a dilated eye exam.

Drusen can be present for a very, very long time (decades even) in the macula before vision deteriorates. But if the disease progresses, not only is waste not able to escape the retina (and builds up as drusen), it also creates a thicker and thicker barrier for nutrients to get through in order to feed the retina.

Advanced AMD

That is what is at the heart of vision loss in AMD, the photoreceptors are not getting enough nourishment so over time either AMD can progress to advanced dry AMD or turns to wet.

Advanced Dry AMD (often called geographic atrophy) occurs when the photoreceptors don’t get enough nourishment and slowly die off (atrophy) over time until there are no photoreceptors left in large areas of the macula. No photoreceptors = no vision in that area.

Wet AMD occurs also because of lack of nourishment and oxygen to the retina. 15-20% of the time the body decides it’s a good idea to grow NEW blood vessels from the vasculature underneath the retina, through the RPE, and into the retina itself. In theory this sounds good, right? New blood vessels = new route for more nutrients and oxygen to get to the photoreceptors. It is a good idea……but unfortunately it’s only good in theory.

These new blood vessels, known as neovascularization, do not have the same structure as the blood vessels we are born with. They are much more fragile. Because of this they very easily leak and bleed causing fluid and blood to accumulate in the center of our vision which can quickly cause vision distortion or vision loss. So, it makes absolute sense why diet, exercise, control of diseases that affect our vasculature (diabetes, high blood pressure, high cholesterol, obesity, cardiovascular disease as the most common) and supplementation helps to protect the retina.

We can control oxidative stress by providing the retina with the fighting power of antioxidants to protect the RPE from further deterioration and thus less waste deposition.

Exercise helps increase the “push” through that thicker barrier, AMD diet helps feed the retina more nutrients when not enough gets through on its own. Control of vascular systemic conditions helps the blood vessels stay healthy so they can do their job easier of giving nutrients and taking waste. And as AMD progresses, AREDS2 and extra nutraceuticals [medicinal foods supplements, fortified foods, etc] help further boost the amount of good nutrients our macula craves to stay healthy (carotenoids and antioxidants).

It can be hard to change and maintain a healthy lifestyle for the long term. But hopefully understanding this process makes that a little easier when it all makes sense in the end. Have a great weekend everyone!. ~Dr Legge

Written December 7th, 2021.

Images with Dr. Legge’s Notes

Click on each image. To go to the next one, look for the arrow pointing to the right. To go back to the previous one, look for the arrow pointing left.

 

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?

Retinal Repair Using Stem Cells: Part 2 – Current Status 2020

There have been stem cell trials for retinal repair going on in various locations around the world since the FDA approved their use for retinal repair research in 2010.

Warning: there are no FDA-approved stem cell trials outside of research. Why is that important? Check out the first article in this series for the details.

The Problems in Early Research

The goals of the continued clinical trials are to solve these problems:

  • There have been ethical issues with using embryonic stem cells related to religious and political disputes about when life begins.
  • Early research using embryonic stem cells found that these cells were often rejected.  That means that if they are used, the participant takes immunosuppressant drugs exposing them to other diseases. Also, early research found that sometimes these cells migrated and caused tumor growth outside the eye.
  • Stem-cell-induced RPEs injected in a suspension under the retina didn’t stay in that area to integrate with the person’s RPE cells.
  • The method of getting these stem-cell-induced RPEs into the retina through a  surgery called a vitrectomy adds to the risk of adverse effects such as retinal detachments.

I am greatly simplifying this topic because it IS complicated! If you would like a detailed review of this period of time, check out Retinal stem cell transplantation: Balancing safety and potential. It’s written using highly-technical language, but I think the conclusion is clear:

“The promise of stem cell therapy to preserve or restore vision in retinal degenerative diseases is finally taking shape. Whereas a decade ago, such ideas were confined to basic and translational laboratories, in the current era, stem cell transplantation into the retina is finally in human clinical trials in the setting of well-run registered clinical trials with the oversight of the FDA and appropriate ethical and safety review infrastructure built in. These aspects promote the protection of study subjects from undue harm, and facilitate the dissemination of the results to the scientific community and the peer review process.”

Status as of 2018

If I counted correctly, there are 18 clinical trials listed in a chart in the article Stem Cell Therapy in Retinal Disease. Sometimes they are called ‘RPE transplantation.’ They vary in:

  • location of the research: US, UK, Japan, China, and others.
  • source of the stem cells: embryonic, autologous cells which are cells taken from the participant (bone marrow, blood, skin).
  • how the stem-cell-induced RPEs are organized:
    • loose in a suspension which is a fluid or
    • on a single layer of some kind of material (monolayer) that connects them to keep them together. This simulates how normal RPEs are positioned on Bruch’s membrane. The designs and composition vary, but some other terms for this approach are patch, scaffold, layer, implant, or sheet.
  • type of delivery method: injected into the vitreous fluid or inserted below the retina using various procedures.
  • type of retinal disease: AMD both wet and dry, Stargardt’s Disease, Myopic Macular Degeneration and Glaucoma.

Status in 2020

There are 3 stem cell clinical trials that have been making headlines in late May and early June 2020.

London Project to Cure Blindness

In 2015 in a phase 1 UK clinical trial, stem-cell-derived RPEs on a patch were inserted into the retinas of 2 people who had vision loss from wet AMD. In 2018, it was reported that they had gone from not being able to read at all, even with glasses, to reading 50-80 words per minute with normal reading glasses.

A recent update said that 5 years later, these 2 people have retained this improvement. There are other people enrolled in this clinical trial. When the COVID-19 lockdown has lifted, they will be treated.

Lineage Cell Therapeutics OpRegen Clinical Trial

For those who have advanced dry AMD called geographic atrophy (GA), there are 2 issues:

  • There are areas of no vision from dead photoreceptors which are called scotomas or blind spots.
  • These scotomas continue to grow and vision loss gets worse.

In 2015, the company Lineage Cell Therapeutics started a phase 1/2a clinical trial in locations in the US and Israel using their biologic product OpRegen. OpRegen is a suspension containing human embryonic stem cells. There were 4 cohorts (groups) where the treatment varied by the severity of the GA of the participant, 1 of 2 forms of the suspension, the delivery system used, and the number of cells use. For some of the participants they used a delivery system they developed called Orbit Subretinal Delivery System which delivers the stem cells into the retina without the need for a vitrectomy.

The FDA ‘fast tracked’ the clinical trial because “the drug fills an unmet medical need in a serious condition.” That means it will get faster communication and review with the FDA (more details in ‘BioTime’s Subsidiary Cell Cure Neurosciences Ltd. Receives FDA Fast-Track Designation For OpRegen® For The Treatment Of The Dry Form Of Age-Related Macular Degeneration.’

Preliminary data for the 5 participants in cohort was presented in 2020. The findings were:

  • The stem cell product and new delivery system were safe and well tolerated in all 17 participants.
  • For 5 people, there was an average of a 10 line increased in visual acuity over the 15-month followup period.
  • Testing showed improvement of the RPE area with a reduction of the amount of drusen and a decrease in the size of the scotomas of some participants.

National Eye Institute

After positive results using animals, the National Eye Institute announced a Phase 1/2a clinical trial in which a person’s own blood will be used to create stem-cell-induced RPEs that will be transplanted into the retinas of 12 participants who have geographic atrophy. There are two important aspects of this clinical trial:

  • By using a person’s own cells, it reduces the chance that the body will reject them. That reduces the need for Immunosuppressant drugs.
  • The stem-cell-derived RPEs are put onto a single-cell (monolayer) biodegradable scaffold or patch. It’s the first clinical trial in the US to do this.

As a phase 1/2 trial, the participants will be monitored for a year for adverse events to make sure that the stem cell patch and procedure to insert it are safe. Based on the promising results of past stem cell clinical trials, they also hope to see improvements in visual acuity.

Hope for Those With Vision Loss

Vision loss from the advanced stages of any type of macular degeneration is devastating. This line of research has advanced greatly in 10 years. There have been promising results so far. Current and future research is building on those results to give HOPE that vision loss can be stopped and even reversed!!

 

Retinal Repair Using Stem Cells: Part 1 – Background

Research into macular degeneration is aimed at:

  • stopping the disease from developing
  • treating it so that the disease process stops
  • reversing damage that has been done
  • curing it

I’ve shared many examples of each of these areas. You’ll find links at the end to 4 of my articles about research for wet AMD, for dry AMD, for gene therapy research, and for a cure.

In this article, we’ll look at what’s being done in clinical trials to reversing damage and to restore vision that has been lost.

Reversing Damage That Has Been Done

What about those who have an advanced form of macular degeneration and have suffered vision loss? This can occur in any form of macular degeneration including AMD, Stargardt’s Disease, and Myopic Macular Degeneration. The stem cell research applies to all of these.

Vision loss occurs when the photoreceptors die. These cells transmit signals to the brain which is where we get our sight. They convert ‘light to sight.’ They die because the cells that keep them alive called RPEs (Retinal Pigment Epithelium) falter and die. These RPE cells are critical to the retina’s ability to dispose of waste and to make sure the photoreceptors are nourished. We know that retinal cells don’t regenerate, so researchers have been asking the questions:

Can we keep the RPE cells healthy? Can we replace RPE cells that have died? If we do that, can we restore vision that is lost?

There is research into replacing photoreceptors, but it’s more difficult to do. It is currently being explored in the lab and with animals which is called pre-clinical research. 

Restoring RPE Cells – Restoring Sight?

The answer to those questions about RPE cells have been found in the area of stem cell research. What are stem cells? They are specialized cells in our body that can make other types of cells. No other cells can do that. The stem cells used in research come from different sources. You can learn more about them in National Institute of Health’s Stem Cell Basics and A Closer Look at Stem Cells.

Here’s a very simplistic explanation as to why stem cells are of interest in retinal repair:

  • If they can make other types of cells, can they make RPE cells? The answer is yes! These new RPEs are called stem-cell-derived RPEs, and they’re created by the ‘magic’ of science (it’s complicated!) in the lab.
  • If we could take those stem-cell-induced RPEs and get them into the retina, could they replace failing or dead RPEs and keep the photoreceptors alive?

That’s exactly what researchers are working on.

Warning

The topic of using stem cells is one that has been discussed in MANY areas of healthcare. For retinal repair, there is NO proven safe and effective use of stem cells as a treatment for macular degeneration outside clinical trials which follow procedures that are rigorous and based on the scientific method. The first step is to establish the safety of the proposed treatment – that’s Phase 1. Only if the treatment is proven to be safe do the clinical trials progress to find the right dosage needed to be effective and to monitor any side effects. FDA approval comes at the end of a series of phases. You can learn more about clinical trials and why they are important by reading Treatments and Cures: Too Good to Be True? You can also find out what the FDA does and does not do related to macular degeneration.

Beware Unproven So-Called Treatments

Some people and clinics sell these unproven, not-FDA-approved stem cell treatments for macular degeneration. These costly procedures have blinded people & have not been effective for others. For more information about that, you can read FDA Warns About Stem Cell Therapies – Some patients may be vulnerable to stem cell treatments that are illegal and potentially harmful. The FDA has been working to shut down the sellers – that’s what they are – of these possibly dangerous procedures.

Unreliable Resource

The NIH National Library of Medicine has an online resource available called clinicaltrials.gov. It’s where researchers can list their studies which can be accessed by patients, their family members, health care professionals, and the public. Unfortunately, the site has no oversight, no vetting of the entries to make sure they are legitimate studies. Just because you find something that sounds interesting to you or someone you love, it doesn’t mean it is something to seriously pursue. You need to do much more research. I recommend the article Nine Things to Know About Stem Cell Treatments.

Stem Cell Research for Retinal Repair

The FDA approved their use for retinal repair in 2010. You can read about the early research in the 2018 article Stem Cell Treatment in Retinal Diseases: Recent Developments.  Also, you can watch a great 2018 video Retinal repair: Bringing stem cells into focus.

The study of using stem cells is called regenerative medicine.

The Basics

Since retinal repair research started in 2010, the studies have varied primarily in two aspects:

    1. The source of the stem cells. The options used so far are embryonic stem cells and induced pluripotent stem cells which are adult cells that are reprogrammed to look and act like embryonic stem cells. You can read about these in What Are Stem Cells and How Do They Work.  The more recent research has moved to using the induced pluripotent stem cells for several reasons: use of embryonic stem cells has raised ethical issues, they are hard for researchers to get, have a higher risk of rejection, and they can migrate to other places with a possibility of creating tumor cells.
    2. The method of transplanting the stem-cell derived RPEs. The purpose is to get these new cells in the area of the RPEs so they can be integrated with them. Initially, the cells were put into a suspension (a fluid) and injected into the retina. Unfortunately, those stem cells didn’t stay where they were placed. With the help of engineering experts, more recent research has put these cells on a monolayer (single layer) of a material to keep them together so that when they are implanted in the retina, they will stay in that area. The designs vary. Some other terms for this approach are patch, scaffold, layer, implant, or sheet.

Summary of the Concept

The basic way stem cell research is conducted is that ‘new’ RPE cells are created in the lab from stem cells and injected into the retina. Hopefully, these stem-cell-derived RPEs should then integrate with the person’s own RPE cells so that they can do what RPE cells do: nourish and clean up after photoreceptors. Sounds simple, yes? It isn’t. There are issues regarding rejection of these new cells and the safety of using immunosuppressive drugs, their possible migration to other places in the body where they may create tumors, safety of the method that delivers the stem-cell-derived RPEs, and more. That’s why the clinical trial process is so important!

The History

As I wrote above, the FDA approved the use of stem cells for retinal repair in research in 2010. Phase 1 clinical trials started that year. The purpose of phase 1 clinical trials is to make sure the treatments are safe. Since stem cell research for retinal repair was so new, researchers were very careful. These early studies used embryonic stem cells with their possible complications. One early trial was stopped out of concern for the participants

Since then, many clinical trials have been done.

When doing your own research on this topic, make sure to check the dates of the resources since much has changed since 2010.

Two early Phase 1 studies were started in 2010 by Advanced Cell Technology (then called Ocata which became Ocata Therapeutics; it’s Astrellas currently). Professor Steven Schwartz, MD, and colleagues reported that 4 months after the first patients had the procedure they found no safety issues of tumor growth or rejection from using embryonic stem cells and no loss of vision. In 2015, they reported that of the 18 patients treated, more than half had improvements in visual acuity. They found evidence that the new RPE cells were integrated in the retina. They also reported that although the treatment was safe, which meets the objective of a phase 1 clinical trial, more follow-up was needed. 

I could give you a LONG list of articles about the clinical trials that came after this one. A lot of progress was made, a lot was learned. I want to fast-forward to where we are today with this promising research.

Next: RETINAL REPAIR USING STEM CELLS: PART 2 – CURRENT STATUS 2020

More Research

A Cure in Our Lifetime?

Have Dry AMD and Wonder When There Will Be a Treatment? 

Have Wet AMD and Hoping for Something Other Than Injections?

Gene Therapy Research for AMD. Stopping the Disease

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

I’m Bored – Again!

Hi, there! Again, I have not been given an assignment but I AM writing for a very good reason: I am bored! Nothing I should do is appealing. So I am going to write about…whatever. Send me an assignment if you don’t want this to continue happening. [Lin/Linda: yes, PLEASE give her something to do. She’s not happy if she’s bored, and “if she’s not happy, …” Do you know the rest of this phrase? ::grin::]

First of all, I understand we have had a large number of new Facebook group members. Although I am not one of your number, welcome! I think you will find we are a “country” without strict borders. Nearly all are welcome.

We do keep a dedication to the scientific method of inquiry. That means we like to have information that has been researched and proven to have, if not a definite answer to our communal problem, at least a flicker they are on the right road. In other words, if your great aunt heard that burning pocket lint in the microwave and huffing the smoke is a cure, we don’t want to hear about it. If that same process is being written up in a scientific journal, let us know!

We are also – as of this instant – nonprofit. Very nonprofit. If we are not making money on this project, NOBODY is making money. Therefore we do not take advertising, either straightforward or covert. People who have blatantly tried to sell things on these pages have been asked to leave.

If we can get you a hot discount on something we have used ourselves, we will do so. Occasionally you will see a page about a particular brand of merchandise. It s because one of us has been able to get a good deal.

That is pretty much it. Beyond basic civility, two rules: research-based and no advertising. Simple.

From what I understand – remember I am telling you my version of the “rules”, and I am not even ON FB! The girl can have attitude! – Lin has asked some people to watch the professional and lay media and report back. Want a job? I suspect she could use volunteers. [Absolutely LOVE volunteers!]

Leaving me something like 165-160 – words to share some info. I try to keep these pages to about 500 words. I cannot say for you, but my reading speed is significantly slower than it was. I don’t do well with dense prose. I assume you have the same problem.

News? Healio is reporting there may be a new anti-VEGF “kid” in town. Klondike Sciences recently finished a phase 1 trial on a compound called KSI-301. I am thinking the 301 means the 301st attempt. Maybe? In that case they are nothing if not persistent!

Be that as it may, the results were promising enough to do what will probably be a phase 2a study. That is another safety and tolerability study with more subjects. It is still early in the game for KSI-301 but it might prove to be of value.

Running out on my word count, so allow me to again say welcome! If you have a topic you would like researched, please let us know. As you can see, I get in trouble when I have nothing to do! [She does!]

Please ask! As a value we also have member empowerment. You remember Scholastic Rock? We learn because “Knowledge is Power!” Let us empower one another.

Bye!

Written January 4th, 2019

Next: THE TIME TO PREPARE IS NOW

Filling the Pumps

At approximately 15:45 hours yesterday, the body of a dark-colored field mouse was observed at the bottom of the pool. It appeared to be death by misadventure. However, when this technician attempted to remove the body from the scene, she was jumped upon by Etta Puppygirl, of this address. Ms. Puppygirl hit this technician squarely in the back, and she pitched forward into the water. While the evidence at the scene suggested accidental drowning, should other evidence come to light, Ms. Puppygirl should be further investigated.

Jeez. Do other CSIs go through this?

Ok. Enough of the nonsense. Sometimes I just cannot help myself. 🙂

And in the real, official news…Retina Today interviewed Carl Regillo about the ranibizumab port delivery system. It appears the RPDS is placed in the sclera. It is situated in the conjunctiva, the mucus membrane that covers the front of the eye. Where in the conjunctiva? It is placed in the pars plans (literally the “flat part” of the eye.) The pars plana is located near the junction between the sclera and the iris. That is the white part and the colored part. While the reservoir is initially implanted in the operating room, sutures are not required and it can be refilled on an outpatient basis.

Results of phase 2 clinical trial should be out very soon. The name of the study is LADDER.

While the RPDS system is the popular guy on the block now, reading this article, I found out it has competition! Replenish has invented a system called the Ophthalmic MicroPump System. This device sits on top of the sclera – not sure how that would work for me – but it is programmable. That part is cool.

Neurotech Pharmaceuticals has been working on Encapsulated Cell Therapy. This device will contain genetically engineered cells that will actually produce the substances needed to keep things working well. In other words, there would be no reason to refill the device. Put really basically, the other devices are filled with eggs. This device is filled with chickens that produce all the eggs needed.

As of the writing of this article, Neurotech Pharma was having a few problems producing the perfect “chicken.” That does not, however, mean they have given up.

And speaking of weird science and Carl Regillo, Healio reported Regillo will be heading up the only American feasibility study for the Alpha AMS Sub-retinal device.

This device is not for us. It is for retinitis pigmentosa patients who are blind. The Alpha replaces the missing and nonfunctional photoreceptors and apparently interfaces directly with the visual part of the central nervous system.

I found a 2013 article in MIT Technology Review that compares the Alpha to the Argus, the original artificial retina system we discussed. It appears the Alpha requires no external hardware while the Argus uses a camera mounted on glasses. The Argus surgery is three hours while the Alpha surgery can be up to 10 hours. Vision produced by either system is not great, but remember something can be better than nothing.

So that is that. No more drown mice today so I am hypothesizing we do not have a serial killer in the house. I would like a way to know which Puppygirl chewed on the furniture, though. Perhaps I need a consultation! Anyone know a forensic dentist?

Written August 5th, 2018

Next: Coming Out

Home

Denizens of the Dry Side

Hi. I will have you know I just finished shampooing the living room carpet.? Done is done, and I am done in. Just a little too much pushing and hauling for my taste. Even with coasters under all the legs, that furniture is heavy!??

The moral to this story? There is always tomorrow…and if tomorrow doesn’t come, a half-shampooed carpet is the least of our worries! Do as I say, not as I do, and take care of yourself.

And since I am just about totally worn out, I guess that means it is time for a page. Don’t you love I think about you when my eyes are crossing, and I can’t get out of my chair?

Medscape published an article by Laird Harrison (cool name, Mom Harrison. Good job!) It seems there have been some reactions to anti-VEGF shots. A LOT of reactions. There have been “clusters” of inflammatory responses and they have many retina specialists concerned. One retina specialist was really unnerved when he had six patients with bad responses in one day!

The problem has been significant enough they will be talking about it at the American Society of Retina Specialist upcoming meeting. Maybe they will be able to do a bit of detective work and figure out what is happening. Bad batch? Allergic reactions? I don’t know, Watson, but I would suspect the game will be afoot!

If you had a bad reaction to a shot, I would suggest you make sure your specialist passes on the information. If it were a bad batch or something similar, there may need to be a recall. Get that stuff off the shelves.

Also at the ASRS conference, they will be talking about the port delivery system for ranibizumab and the phase 3 SCORE findings. SCORE is the study that compares bevacizumab to aflibercept. So far they are finding bevacizumab to have comparable effects.

HAWK and HARRIER are not only fighter jets. They are also studies trying to find a way to predict which anti-VEGF may work for a given patient….hmm. British fighter jets. British studies? No se.

And coming to the dry side, it appears APL2 is being investigated as a prophylactic measure for dry AMD. Remember the information from the poster session suggested APL-2 slowed the progression of atrophy but did nothing for acuity. Not sure why that would happen but most people want to see acuity losses slow and people became skeptical. Not sure what this move to prevention is all about but it may bear watching.

As usual, wet AMD continues to be the favored child with the researchers. Scanning the Retina Specialist article about what is in the pipeline and expected to emerge in 2018, the great majority of potential new products are for the wet form. There were three for dry and one of these was “lamp stuff” which most of us know failed in phase 3 trials.

Frustrating as it may be, hang in there oh denizens of the dry side. Miracles have been known to happen. I shampooed my carpet!?

Next: Mailbox or child?

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In the Pipeline for Wet AMD

Help! Stop me before I write again! Lin is going to shoot me. I have housework to do and a psychological evaluation report to write and what I feel like doing is pretty much exactly nuthin’, muffin. Too hot. [Lin/Linda: I don’t think that would stop the speeding train that is YOU! ::grin::]

20 minutes later
Ooopsie. Back from running after the Maggie Monster. She got out and decided to go play with the big dog down the way. That is BIG dog. Do you know what three days of a heat wave does to asphalt and bare feet???? Ouch!

But enough of the autobiographical details. I found an article entitled Wet AMD in 2018: Drugs in Development. I really swear the researchers love you guys better because they do all sorts of wonderful things for you. ?

For example, an anti-VEGF called Brolucizumab is in phase 3 clinicals. This drug is exciting because it can be dosed in larger amounts resulting in extended times between treatments.

OPT- 302 is a compound that will block the activities of the proteins VEGF-C and VEGF-D. Remember VEGF stands for Vascular Epithelial Growth Factor. The VEGFs cause the growth of substandard veins. Blocking these in wet AMD is a good thing.

According to this article, ranibizumab blocks VEGF- A. Not too sure how many letters there actually are, but combining OPT-302 with ranibizumab will take care of more of the alphabet.

OPT- 302 is in phase 1/2 clinicals. It will take a while.

Ok. Get out your water wings ladies and gents because it is getting a little deep?.

Platelet growth factor binds to a tyrosine kinase receptor. The receptor is essential for the survival, recruitment, and maturation of pericytes.

No, not parasites. It just sounds almost the same. According to Wikipedia, pericytes are associated with allowing cells to differentiate, multiply and form vascular branches among other things. The bottom line is: disable the platelet growth factor and you can stop or significantly slow the growth of new blood vessels. One more way to get to the goal. Not anti-VEGF. This one is anti-PDGF. Auntie Pidge? [No, I have no clue where she comes up with some of this!! ::grin::]

Names to look for: pegpleranib and rinucumab. So far pegpleranib has done little to nothing in clinical trials but they are combining it with anti-VEGFs to see if there will be a combined effect. Rinucumab did not do much either. Same with DE-120 (Santen). However, you never know. The concept appears sound and they will probably keep working on them.

They continue to look at tyrosine kinase inhibitors in other studies. Vorolanib is in this category. The APEX study is in phase 2. Maybe one day you can have Auntie Pidge to thank for saving your vision!

The article goes on and talks about drugs that attack angiopoietin 2. This is a blood vessel growth factor. They are also targeting substances that require a lot more knowledge of biochemistry than I ever wanted to have or thought I would need to understand what they do. Suffice it to say they are all compounds that have a role in making those nasty, extra blood vessels grow.

So that is what is in the pipeline for you wet folks. Seems like a lot. Are you SURE they don’t love you better?

[Just so that we don’t forget, there is research going on for dry AMD as well.  Here’s Summary of Research and Development — 2018 by Dan Roberts with research in both dry and wet AMD.]

Written July 3rd, 2018

Next: It Might Be That Pony

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Why Drop Out?

I wanted to start this page by saying I am enjoying the halcyon days of summer but then realized I do not know what ‘halcyon’ means!

Hold on…OK, synonyms are “calm, peaceful and tranquil”. We’re good…except for Etta jumping on my head in the pool. I am thinking I won’t actually be able to swim when they are in the pool area. Etta swamped me!

Oh, well. If that is the worst that happens today, I am ahead of the game.

Moving right along. Halcyon days of summer, etc, etc. I have been outside walking and hanging out at the pool with the puppygirls most of the afternoon. Blessedly sunny today but I am reasonably sure I have gotten burnt.

Remember to wear your shades. Yes, your eyes can actually get sunburnt. More importantly, UV rays contribute to oxidative stress and that leads to all sorts of things ending in more vision loss.

Since I have some days with nothing to do, I have gotten a load to the animal rescue yard sale and bagged up all the recyclables to transport to the recycling center. Among other things, of course. I have high hopes of using this time wisely to do a lot around the house.

Please note I am sitting by the pool and writing this page. Sigh. The best-laid plans of mice and men. Did I mention I really dislike anything to do with housekeeping?

Found an interesting website. It’s news-medical.net. A while back Lin did a page on eye drops for wet AMD. News-Mediçal reported PanOptica announced at the end of May they had dosed their first patient in a 1 / 2 clinical trial with PAN 90806. PAN 90806 is a once-daily eye drop containing a very small molecule anti-VEGF. PanOptic is hoping to avoid the cornea problems that occurred in earlier trials.

They also, of course, are looking to reduce the “injection burden.” The article says they hope a reduced burden will lead to folks staying in treatment longer.

Whoa there! Discontinue rate for anti-VEGF shots? Let’s look.

A 2017 journal article by Polat, Inan, Ozcan, et al (and yes, this was Turkey) reported a dropout rate of nearly 18% and a non-compliance rate of nearly 40%! Oh, good grief!

Not sure what the dropout rates are for the US, UK or EU. The only article I found based in the US was with the very old. Does anyone know what it is for us under 90?

The article from Turkey talked about the “usual suspects” as being related to compliance rates. You know: age, education, distance to the hospital, finances, etc.

Any way you look at it, it is scary. I never gave a thought to treatment compliance. If I had, I would have assumed dropout rates were low. Maybe not.

Any thoughts on this? What makes you folks getting shots want to quit? What do you think could be done to help people stay in treatment? Let’s start a discussion.

Written June 9th, 2018

Next: Forewarned is Forearmed

HOme

Combination Therapies

Back home from my penultimate day at my school job. They had a luncheon for me. Strange. Very strange. My preference would be to lock the door and walk out quietly. For some reason, they seem to think that is unacceptable.

Now I am sitting on the back deck eating slightly stale chips with the puppygirls. This is part of the reason I cannot be unemployed. The family sized bags I occasionally buy at the warehouse store would not have a chance to get stale! We would have to go on mommy/doggie diets!

I got everything I needed to finish at school done today. Also did a little outside (non-school) work. Don’t tell?. Tomorrow is just a formality. I will take stuff for the counseling center and also stuff to prepare for the adult education, mini, mini-course I will hopefully be teaching in the fall.

I decided it was time to put up or shut up. I am doing a very brief, three-session course on Age-Related Macular Degeneration. If I get any takers, that is. It all depends upon whether or not I have students.

So any thoughts on what I should cover? Lin thinks I should include the new stuff they are doing with the “brachytherapy” device. Maybe I would if I knew what it was!

Fortunately, Lin included an EyeNet post all about it.

First of all, the online dictionary tells me that brachytherapy is a way to fight cancer. Sealed radiation sources are placed in the tissue near the area that requires treatment.

Since we don’t have cancer, I guess I need to read the EyeNet article and see how this treatment relates to us.

Once again this is a treatment for wet AMD. (Not funny guys. I really think Daddy likes you better!). It is another crack at improving the effectiveness of anti-VEGF drugs through a combo therapy approach. They are interested in reducing the burden of regular eye shots.

Unfortunately, results have been mixed. CABERNET fell short of its goals. (I prefer a good Moscato myself. However, if they are naming their studies after wines, I think I want to be invited to their Christmas party ?).

The INTREPID study used an x-ray based treatment and got good results. Combined with their x-ray based treatment, eye shots were needed nearly a third less often. They also reported visual acuity at least as good if not better than eye shot treatment alone.

There is more to the article. I will read through it and see what they have to say about irradiation and wet AMD. Maybe add it to the next page. Suffice it here to say anti-VEGF treatments are evolving to the next level. Combination treatments will soon make it so you rarely need to go for eye shots. All in all, not a bad thing.

Catch up with you later!?

Written June 4th, 2018

Next: Now what?

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I Need a Sherpa

Happy Cinco de Mayo! Also Kentucky Derby Day! Things happening all over the place.

I got to the bagel shop for a chicken salad bagel sandwich today. That sort of thing is big news when you don’t drive any more. No unplanned stops when you ride transportation. I had been thinking about chicken salad on a bagel for a couple of months. Sad but true. Interested enough to keep thinking about it, but not interested enough to plan a special trip.

Sometimes it is the little things that drive home the impact of visual impairment.

But I got there and I am getting to the conference too. That is tomorrow. Trying to figure out what to pack. I am thinking I am going to need a Sherpa. I have my CCTV, plus MaxTV glasses, plus handheld reader, plus my binders from DBT class. I have to take clothes for five days. One colleague asked if I were taking workout clothes. Maybe we could find a yoga studio…that doesn’t mean I need to take my mat, does it? Another colleague asked if I were taking a bathing suit. Oy vey. Like I said, I think I need a Sherpa! I was bad enough before my vision impairment; now I am hopeless.

Oh well, we plod along.

And in other news, I see Medscape revisited the concept of combo therapies for wet AMD. In their May 4, 2018 post they reported Regeneron had tried to boost the effectiveness of Eylea with an antibody, rinucumab. It did not work but they will keep trying new things. Not to be too cynical about this, but at least part of the reason is Regeneron’s earnings are not growing as fast as they were. Lack of profits, like necessity, can be the mother of invention.

Regeneron had paired with Bayer on rinucumab. Bayer usually comes out on top somehow. Historical note: Bayer’s parent company used slave labor during the Holocaust. It also had significant holdings in the company that made the poison gas for the gas chambers. They did apologize. In 1995. I believe that was at least several years after my parents gave me Bayer baby aspirin. ? Go figure. Like I said, though, Bayer generally comes out on top, so it is probably a good company to have in our corner.

But I digress, again, still, whatever. I assume most of you have lively minds and find some interest in these little diversions.

Regeneron has tried several other compounds paired with Eylea already. None have been very successful but I doubt they are done trying. One of these attempts is going to find something that will significantly improve the efficacy of Eylea and thus improve the lives of you wet folks.

Just keep the faith. Amazing things are happening all over the place.

Written May 5th 2018

Next: Audio Holodeck?

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From the Inbox

Monday morning and I am waiting for the van to go to work. Thus endeth another weekend.

Next week at this time I will be just about starting a five day long seminar. My life just keeps pulling me along….by the hair…as I scream.

No, not really. It is all by choice. I could always say “no!” But I don’t.

Taking a minute to look at my old email, I found a really old Medscape post from 2015.  And no, I am not THAT far behind. It was an article referenced by another article. Anyway, the article was about how Pegpleranib is being used as a pretreatment for wet AMD. They are experimenting with this stuff in patients who are treatment resistant. The hope is that Pegpleranib will increase the effectiveness of anti-VEGF medications.

Although it was a preliminary study the results suggested pretreating with Pegpleranib will not only lead to better visual acuity but it will also increase the duration of effectiveness of the anti-VEGF medication and, in addition, prevent fibrosis. Hold on…fibrosis? Be back soon with some info on THAT little wrinkle.

I’m back. After a day that finally saw 70 degrees Fahrenheit and a hip hop class, all is right in my little world. Keep me warm and let me dance. It appears I am pitifully easy to please!

Onward…I am looking in EyeWiki and found an interesting bit of info – not related to fibrosis, but interesting. EyeWiki quotes the cost of neovascular AMD as being $5.396 billion annually and the cost of dry AMD as being $24.395 annually. That is loss of GDP, gross domestic product. I TOLD you this stuff is breaking the bank. Now do you believe me? ?

OK. EyeWiki says there are fibrous disciform scars formed when there are bleeds. Regular Wikipedia says fibrosis is related to the process of scarring. The process apparently starts when the macrophages – remember the big eaters? – that are sent to clean up the mess from the bleed start secreting a chemical that will trigger the fibrosis. It all keeps coming back to the complement immune system. It appears the Pegpleranib dampens down the chemical signal the macrophages send out and reduces the fibrosis.

The Wikipedia piece goes into a whole lot of explanation about the chemical process that I about half understood. Feel free to look at it if you are interested in that sort of stuff.  Social scientist here; remember?

That is about it for now. I have places to go, people to see, dogs to walk , a lesson plan to write and all sorts of housework to avoid?. I will try to check in later with more gems from my mailbox…or not. Caio!

written April 29th, 2018

Next: That Little Summer Dress

HOme

News from Research

Hey, hey, how y’all doing? I did my Zumba class and half a yoga class and then walked up to the street fair to help with the Y’s demonstration class. Had a hamburger and fresh cut fries as well as an ice cream. I did mention I have a horrible diet; right? Then I waited nearly an hour for transportation. Geez.

If I did not have to walk along a busy road, I would consider walking the three or four miles it is to get home. I probably would get home faster.

Sometimes I actually consider just staying home because of the hassles with the damnable transportation. Then common sense grabs me – or I revert to my old, ornery self – and decide they are not going to break me!

Oh, forgot to mention, I begged, finagled, whatever a ride to Mom Prom tonight. I bought a ‘new’ prom gown at Sal Val. It was $7.50. Also silver high heels. $4.00. Very thrift store chic here! [Lin/Linda: if you are just joining us, the Mom Prom is a party for females over 21.  You buy a gown at the Salvation Army (Sal Val) thrift store.  And you don’t have to be a mom.]

Okay, enough of me. Let’s actually do some eye news.

One of those Healio articles from November, 2017, indicated they are now combining therapies for diabetic macular edema. They dosed people with Lucentis and then shot them with a focal laser. While they did not find any significant difference in the number of treatment required between the dose plus laser and the treat and extend groups or even differences in the visual acuity numbers of the groups, all treatments tried were effective.

So, in essence, they have started to ‘play around’ with treatments and may just find some combo treatments that give better results than singular ones. Personally, I am on two blood pressure medications. Either of them alone did not do a thing for me but together I have good control. There may be some people who will respond beautifully to the one, two punch of an anti-VEGF and laser combo just like I respond to my two, blood pressure medications. You never know.

Also in Healio last November – I did mention I got a bit behind; yes? – they reviewed trials of another anti-VEGF treatment. You wet people sure are popular with the researchers!

This new one is called brolucizumab and it is a “single chain antibody fragment VEGF inhibitor”. They were dosing every 12 weeks and the results were comparable to those obtained with Eylea. Also, side effects were less. In short, one more option for keeping your bleeds at bay. Pretty good.

And one more thing before I go, also back in November Healio ran a follow-up on a concept they reviewed in 2016. It appears about 100 people are now running around with macular hole repairs using transplanted autologous retina tissue. Cool.

Autologous means they get the tissue from the same person they are transplanting the tissue into. The tissue to be transplanted is taken from the superior peripheral retina.

Now, will the vision be as sharp? What are they doing to ensure the transplanted retina connects with the neural network? No clue. What I do know is they have started talking about using this technique to treat macular degeneration.

All told, ophthalmological research is speeding along on a number of different trajectories. Things are happening everyday and it really is the best time in history to be going blind! Hang in there.

Written April 27th, 2018

Next: From the Inbox

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Different Paths

Good morning! I promised myself I would be productive today. Bedding stripped and in the washer, dishes in the dishwasher, a good pancake breakfast in my tummy, now if this webinar would load I might be able to DO something!

Speaking of pancakes, I was taught to flip the pancake when the bubbles are coming up in the middle. Visual cue. I burnt a couple today because I did not catch the little bubbles.

Short of singeing my nose on the griddle, how do I know when my pancake is ready to turn? Any low vision cooking suggestions? Inquiring minds want to know.

Moving right along, I happened upon a 2015 article in Drug Discovery and Development (DD&D) magazine. The article is a bit dated which actually goes to prove the point: research is advancing incredibly fast. Besides remarking that a Nobel laureate, Sir John Gurdon, called RPE replacement one of the most successful stem cell treatments in existence at that time, the article also talked about how regulatory agencies such as the Food and Drug Administration in the States and the Medicine and Health Care Products Regulatory Agency (MHRA) in the UK needed to get up to speed in the area of stem cells.

The article tells a cautionary tale about how the company Geron tried to get the first ES-cell clinical trial approved back in 1998. Their request and justification document ended up being 22,500 pages long and the approval came in – ready for this? – 2009! Good grief. The point is not that the FDA is an obstructionist organization. The point is stem cell science was an ostrich and they were used to dealing with elephants. Nothing fit their paradigms and they had no knowledge about it all.

Pete Coffey of the London Project to Cure Blindness told his own, mini horror story. He had two regulatory agencies to deal with. His wait was one year. Once again his ‘ostrich’ did not fit a system set up to deal with elephants. But kudos to the MHRA. They were not so hidebound that they could not adapt and modify.

The recent, controversial study published by Coffey, et al., was also discussed a bit in the DD&D article. After battling with the regulatory agencies and having his sponsor bail because of no fault of his own, Coffey expressed optimism that, essentially, the worst was over and his research would be moving on. In fact, there are rumors coming out of the UK that they may already be preparing for the next leg of this research. (Remember Lin has spies and secret agents everywhere.)

The article goes on to compare some of the different paths that stem cell treatment of AMD is following. Coffey used stem cells in people with wet AMD early in their disease progression. Work in the States is using stem cells in patients with geographic atrophy. In other words here we are treating after major damage has been done. Coffey and several others have started to be critical of the approach being taken in the US. Are we not at a point now we can pretty much trust the stem cell treatment? Must we wait until so late in disease progression? [Lin/Linda: click here for an article that talks about both the UK stem cell and the US stem cell trials results.]

The other comparison Coffey made was between simple injection of stem cells into the appropriate place and the use of a membrane to give structure to the cells. Coffey supports the latter approach….but that is the topic of an article Lin just sent me. Later!

Written April 7th, 2018

Next: The Patch

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Bedlam

Greetings from bedlam. If you are interested in the etymology of words you probably already know bedlam is a bastardization of Bethlehem as in St. Mary of Bethlehem in London. ‘Bedlam’ in the Middle Ages was where they housed the insane of the city.

Who said we are not educational here? To steal a motto from a huge assessment and publishing house: Always learning.

Bedlam is appropriate here because, well, for one thing, I am still crazy. Tomorrow we have to take the puppygirls to be spayed. Responsible pet parenthood is important.

Then over the weekend I have to apply for Medicare. Moving along swimming through all the red tape and nonsense that seems to be involved in dealing with the federal government.

I still have reports to write and webinar hours to listen to on top of client contact hours, exercise and puppy parenthood among other things. That means some less urgent things are going by the wayside. Like writing a web page for instance.

Thankfully Lin has been doing a lot of legwork for me. She has been sending me all sorts of interesting things.

First of all, back to Londontown. Lin sent me a link to a radio program called In Touch. I had never heard of it, but I am just a dumb Yank, so what do I know? Anyway, it seems like a great resource. It is produced by the visually impaired for the visually impaired on topics of interest to the visually impaired. Cool.

The segment I got was about, first of all, the death of their first producer, a woman by the name of Thena Heshel. Listening to some speeches she had made about the early years had me shaking my head. Heshel commented about how people were only supposed to get information from vision professionals and the professionals were telling them nothing! When she, a layperson, started sharing information, she was chastised by the powers that be!

While we have not gotten a good tongue-lashing (yet), I could identify with the no info part. It drives me crazy when people feel they have the right to withhold or to parcel out knowledge as if it were their own private property.

Knowledge only gains real value when it is given away.

So, in other words, if you are ever playing a trivia game and the question is about the etymology of bedlam, you now know the answer! Giving the information to you helped to give it value because you could use it. Same with knowledge of our eye disease. Please use it and pass it along. Sharing knowledge can only increase its value.

And jumping down from my soapbox ?, I want to say I was relieved to listen to the rest of the In Touch segment Lin sent. The rest of the segment dealt with Professor Pete Coffey and his recently published study. They spoke of the sensational way the study had been publicized and the problems associated with that.

Professor Coffey also spoke about the research being extremely promising especially for wet AMD patients who have not responded to Anti-VEGF shots and who have been gotten to quickly. He made the point the therapy is not currently available. Several more clinical trial phases must be navigated before it is available to the public.

Thank, goodness! Balanced reporting. In Touch, it was good to meet you!

Written March 30th, 2018 Continue reading “Bedlam”

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

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

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

AREDS: 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