Doctor DanB : Hello and thanks for your question. Can you tell me what is making you want to amp up her vitamins? Is she havingi a worsening of her wet or dry macular degeneration?
JACUSTOMER-cqekorm0- : her wet macular is not getting worse, she is receiving shots. her dry macular is stable, but I understand she needs higher doses of vitqamins to help slow the degeneration
Doctor DanB : Who told you that a higher dose would help slow the ARMD?
JACUSTOMER-cqekorm0- : it's all over the internet. in fact her doctor told her to take eye vitamins
Doctor DanB : Yes, you're right--that advice about taking the AREDS formulation vitamins is correct, but did her doctor say that she needed to take even higher doses than what is recommended on the packaging? Or are you just asking whether higher doses would provide a greater effect at slowing the progression of the ARMD?
JACUSTOMER-cqekorm0- : her dr did not really give us much advice. I have just been doing lots of research. I went to the Mayo Clinic web site and they talked about taking much higher doses of certain vits.
Doctor DanB : You don't happen to have the web address to the particular Mayo Clinic web site that talks about taking much higher doses, do you?
JACUSTOMER-cqekorm0- : yes, i am looking. but in the meantime i went to www.hpr.org and they offer the same advice
Doctor DanB : Okay, I'm on www.hpr.org; can you tell me how you navigated that website to find that information?
JACUSTOMER-cqekorm0- : I have been on this darn computer all day looking for information, and have totally lost my mind. can you just try Mayo clinic macular degeneration.com and see what you find. I am a little bit disconcerted you don't know about all this stuff I have been reading. could the entire internet be wrong?
JACUSTOMER-cqekorm0- : i am horrible with computers. i could never navigate you to a web sit unless we were on the phone and I had the web site up and could talk to you
JACUSTOMER-cqekorm0- : i have brother and sister
JACUSTOMER-cqekorm0- : I have a brother and sister over 60 and I want to help them slow down this eye disease as much as possible
Doctor DanB : No problem. Don't worry about it--I just wanted to addres exactly what you saw to make sure I could speak to the exact information you saw, but I have been perusing the mayo clinic website and nothing that I've seen is out of whack with everything I know and recommend for ARMD. Just to set the record straight, the AREDS2 formulation of vitamin supplements are the best way we know to help reduce the incidence of wet macular degeneration and to slow the progression of wet macular degeneration. This is hands down the most important thing to be doing.
Doctor DanB : In addition...
Doctor DanB : Monitoring the vision with an Amsler grid at least 2x/week is important to make sure that any significant changes in the appearance of the grid are evaluated soon and treated if necessary to help make sure any leaking/bleeding in the retina related to macular degeneration are treated in a timely fashion to avoid permanent vision loss. However,
Doctor DanB : I can tell you that, unfortunately, there is no increased efficacy to be gained by increasing the doses of the vitamins she takes--that's why there is a recommended formulation of the exact concentration and volume of each antioxidant to be taken. Does this make sense?
JACUSTOMER-cqekorm0- : that is not what I have been reading all day. is there any way I could log off, find the site and write it back to you?
Doctor DanB : Certainly so. You can just come back to this thread and let me know what you find. I will check back periodically to see if you've responded. But I can assure you that the most recent research done (AREDS2) doesn't advocate doubling the dose of the recommended supplements--while this may be stated in several places on the internet, exact science doesn't bear this out, at least not yet.
JACUSTOMER-cqekorm0- : when youn say thread you mean this web site? I had a problem signing in because it was not happy with something i keep typing. I have an account and could not remember my password, then i just clicked to ask the question and got you. what can i do to make sure i reqch you again?
Doctor DanB : Is this page you were referring to? http://www.mayoclinic.com/health/macular-degeneration/DS00284/DSECTION=treatments-and-drugs
JACUSTOMER-cqekorm0- : i think so. it was not that long, but some guy named Dr.Gold-- was the one talking about the vitamins
Doctor DanB : Okay, while one of the subheadings of this page does say "Increased vitamin intake", this is referring to increasing the intake of specific vitamins beyond what is found in the normal, daily diet. Then, they go on to list the amounts of each vitamin supplement that should be ingested in the diet on a daily basis. But this does not mean tha the doses of the AREDS supplements sold in the drug stores should be increased, just the dietary intake of these individual vitamins/minerals if you are attempting to get this nutritional benefit by taking vitamin supplements vs. ingesting food to get them.
Doctor DanB : Does that make sense?
JACUSTOMER-cqekorm0- : it does, i know it is not good to take too many of certain vitamins. but, my mom does not eat well so will get nothing from her food. I live in CO and she lives in WYO I have the neighbors watching out for her, but they can't be there all the time. I found one site that had the lutein up to 100mg and the zeaxathinup to 30mg and the bilberry up to 30mg. why are these people so misleading. I would like to find the web site and send them to you.
Doctor DanB : I'm happy to take a look at the website information you have. However, the important thing to consider is you'll find literally dozens upon dozens of varied OPINIONS about what this doctor, that doctor, and many other people think they should have you taking, but I think it's important to understand that until a certain concentration and formulation is proven in large-scale, randomized, double-masked reseaerch studies, then there is not sufficient evidence to show that those people's recommendations are PROVEN to work--they're just conjecture. Now, will taking increased concentrations of these vitamins hurt your mother? It's quite likely that it won't, but there just isn't the evidence that exists to show that it will help.
JACUSTOMER-cqekorm0- : would my brother and sisters take the same vits? since they don't have the disease why would they take the same ones?
JACUSTOMER-cqekorm0- : this is so frustrating to me. I feel like I have gotten no where. isn't there something more than the Walmart vits I can give my mother?
Doctor DanB : Again, going back to the research...the only people that are PROVEN to be helped by taking these vitamins are those people are already have macular degeneration that is more advanced than just a little bit--the people with very early macular degeneration or none at all can't expect an benefit from taking these vitamins. The research doesn't show this, but it's very likely that it won't hurt them.
JACUSTOMER-cqekorm0- : Good grief! wouldn't it help people without the disease to have the vitamins in the needed doses for their eyes?
Doctor DanB : I understand that you must be very frustrated. It is a devastating disease and can make the person affected with the disease, as well as their family feel utterly helpless. However, there just isn't any evidence to show that doing anything else will help stem the tide, other than taking the daily vitamins, monitoring the vision with the Amsler grid, eating a healthy diet (to the best extent possible) and wearing U/V sunglasses when out in the sun. I wish I could give you a magic bullet, but unfortunately it just doesn't exist. I'm sorry to be the bearer of bad (or at least not better) news.
JACUSTOMER-cqekorm0- : so, all those web sites are just trying to sell expensive vitamins, like snake oil, to offer hope where there is none?
JACUSTOMER-cqekorm0- : They never said they would cure the disease, just slow the progresson
Doctor DanB : Yes, it is logical that persons who are at risk such as your family members would benefit from taking the vitamins, and they very well may benefit from it, but my recommendation as an ophthalmologist/physician can only carry the weight of science when there are specific research studies to back up that question. And so far, in this pafrticular issue, no one has been able to prove that taking the vitamins before you have ARMD can prevent it from happening. However, eating a healthy diet, not smoking, wearing sunglasses with U/V protection, controlling medical diseases like high cholesterol, high blood pressure, and diabetes are important things to do to help lessen the risk.
Doctor DanB : I would suspect that many of these websites are just selling the same formulation of AREDS/AREDS2 supplements in a differentn form or package. After all, if you look in the drug store, you'lll find several different formulations (brands) that all essentially provide you with the same nutrients. Everyone's trying to make a buck by making their product seem like it is the best!
JACUSTOMER-cqekorm0- : their list of vitamins are much longer and higher doses
Doctor DanB : I see... Unfortunately, they don't have scientific evidence to back their claims up, if they are claiming that THEIR formulation has a better chance at slowing the progression of ARMD than the standard formulations.
JACUSTOMER-cqekorm0- : so, just to make sure, that dinky list of vitamins in the IREDS 1 and 2 are the only vitamins you would recommend. what about people that are told their child will die, or what ever, so they go do their own research and find a cure? Are 'they' doing big time research on this today?
JACUSTOMER-cqekorm0- : do you know of a trusted web site or monthly flyer i could receive just to keep up with the research?
JACUSTOMER-cqekorm0- : why are people such liars?
JACUSTOMER-cqekorm0- : i am just sick about the information you have given me
Doctor DanB : I would never discount someone's actual, physical experience with a treatment or medication. I certainly know that these types of successes happen. I don't discount that, and I would never say that you would absolutely not have a better chance if you increased the recommended doses or doubled them, or tripled them. I'm not omniscient and I've learned never to say never in medicine. However, when I give an official recommendation, people tend to believe me, and so I make sure that when I'm talking about the population at large and trying to give recommendations to a population of people, to whom I can't speak to idnividual cases, all I can do is hang my hat on what science has already PROVEN ;if I were to offer conjecture, then I wouldn't be much better than anyone else. Give me just a minute and I'll come up with a couple of websites you can trust to keep up with the latest and most important news about this. And to answer your last question, I think the most obvious answer is $$$$$$. Everyone wants to make a buck or to have fame. Just give me a minute or two and I'll be back with those websites.
Doctor DanB : http://www.geteyesmart.org/eyesmart/ is a website that is the information arm of the American Academy of Ophthalmology. It provides official recommendations of what is proven by science to work and will allow you to keep up with the latest announcements and research.
JACUSTOMER-cqekorm0- : I do believe your official recommendation, I just thought there was more i could do for my mother. I will follow your recommendations.
Doctor DanB : At this website you can sign up for a newsletter to receive updates about research. http://www.macular.org/
Doctor DanB : Do you have any other questions about this?
JACUSTOMER-cqekorm0- : thank you, ***** ***** let you go. no more questions.
Doctor DanB : my pleasure. Good luck. Your feedback is important to me and will help me improve my encounter with future customers. Please rate your encounter with me by providing positive feedback (by pressing the smiley face); any positive feedback and/or bonus you may feel prompted to provide would be welcomed and is appreciated. If you feel like your concerns are not resolved or you have a problem or issue with anything I have said or haven’t said, please don’t issue a negative feedback rating—My goal is your satisfaction and I would rather work together to solve your concerns, until you are satisfied, than have you leave our encounter unhappy and unsatisfied. My opinion is solely informative and does not constitute a formal medical opinion or recommendation. For a formal medical opinion and/or recommendation you must see an eye doctor. Thanks for your inquiry!
JACUSTOMER-cqekorm0- : thank you for the web site. Good night.
Doctor DanB : You're welcome.