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From: Ryan ( -98.100.170.152)
Subject: Re: macular degeneratin
Date: February 20, 2009 at 6:50 pm PST

In Reply to: macular degeneratin posted by Leslie on February 5, 2009 at 1:53 pm:

I'm truly sorry to hear about your diagnosis. I know firsthand how frightening it is - I was diagnosed with Ocular Histoplasmosis Syndrome nearly 2 years ago (which basically gives me the same situation with overdeveloped and leaking blood vessels in the retina as with macular degeneration), and it's been a great period of adjustment since then.

I wish I had some insight as to anything that would really help undo any damage, but I will say, if your ophthalmologist presents you with the option for Avastin injections, it is well worth doing, and doing more frequently to begin. They've halted any further damage for the past 14 months for me by getting the injections every 10 weeks, and while it's not fun taking a needle in the eye, it's a lot less fun to lose your sight. Laser treatments should be reserved for periods of leakage and only as a reaction to damage, as even the cold laser that's supposed to spare you from excessive collateral damage still will give you permanent blind spots (as I've had to contend with), so I strongly recommend taking the injections more often for a few years to keep leakage at bay. So far, I'm fortunate enough to only have lost about 5-8% vision in one eye, and I still maintain 20/15 when I test every other month, even with the damage done. The one caveat is, with the treatments, there is some risk. I have two main issues I'm facing due to the laser treatments and Avastin injections. First, the Avastin has a tendency in some people to slow healing for cuts and scrapes on the skin. Things that normally heal in a few days can take 2-3x as long for me, which isn't a horrible side effect, but still isn't all that fun. The other, which is much more irritating, is that I was one of the unlucky people who developed minor double vision from the treatments (they're not sure if it is from the laser or injections). It only affects me when reading or looking at lights against a dark background (such as, stoplights at night), and is easy enough to deal with, but is actually more irritating than the small blind spots I have from the initial damage. So, even with being able to halt damage, there are still some concerns about how treatments can carry their own problems.

However, the good news I've found in keeping things at bay naturally are:

1. Stress reduction is key. I have had to go from being a high-strung individual who worried about everything to the exact opposite, only stressing over things of the utmost importance. EVERY doctor, ophthalmologist and naturopath I've spoke with says that reducing stress is probably the MOST important thing you can do with anything that's creating new blood vessels and causing leakage in the eye. My condition came out quickly and severly under a time of great stress and tension, and it's likely that my excessive stress triggered it when it did.

2. Reduce processed food consumption, intake of sugar and caffeine. Anyone outside of traditional medicine has made these suggestions to me regarding my condition, and it certainly hasn't hurt me much. I've had to go from being a sugar and processed carb junkie to eating more cleanly, but if it helps me to keep my vision, it's a small price to pay.

3. Exercise regularly. Another thing that I've heard over and over again for keeping the condition at bay, but of course, no exercise where you're straining at maximum effort for a long period of time. I continue to do weight training multiple times each week, but I've had to change my routine slightly to be more accomodating to my condition. But, all who I've spoken with say that keeping active is important to keeping the condition under control, so definitely stay moving around a lot rather than being sedentary.

Unfortunately, no supplements I've tried have really made any difference. For the condition we have, there are plenty of recommendations, but I haven't found ANYTHING to be very helpful, and for a while, I was taking literally $400/month worth of anything that would be suggested. Now, I take a simple vision formula, drink potent green tea daily and take pycnogenol, but that's it. While you'll hear of all sorts of miraculous supplements and remedies, there's nothing that will reverse the damage, and nothing that will be guaranteed to halt the blood vessels from re-forming and leaking. And, who wants to gamble another bit of damage between treatments because of some supposed cure that they read about on the internet?

Finally, the ray of hope for us. I've found a few articles online that have said that researchers have been able to culture, regrow and inject new retinal cells and have been able to see a 30% increase in vision in subjects. Of course, this is all in trial stages and is not expected to be mainstream for up to 8-10 years from now, but with proper care and treatment, we can prevent much damage from occurring until this research becomes reality for an option to undo any damage done. For me, it may not make a massive amount of difference as my disorder is caused by a fungal infection that I'll have to contend with for the rest of my life, but for you, it definitely holds a lot of promise. So, check periodically for online details regarding regrowth of retinal cells via stem cell therapy (not embryonic stem cels, rather, those harvested from the patient are what is being tested).

Just wanted to let you know you're not alone, and while I had a breakdown after getting the news, I found in time that it's only an inconvenience and not a death sentence. Just keep positive, don't dwell on it endlessly as there's only so much one can do, and keep on top of news that affects our condition so that you'll know about new developements as they happen. I wouldn't be surprised if something for treatment will be available sooner than later, but be prepared to fly to China if you'll want such treatments done years before they become available everywhere else. Finally, there is one naturopathic ophthalmologist in Arizona, Dr. Kondrot, who has made claims to have some therapies that have helped people to regain some sight after the effects of macular degeneration. It's going to set someone back about $4500 to spend a few days at his clinic getting tested and going through treatments, but I have heard good things about him and may well consider taking a trip there in the next year or so to see if it can make things any better. He's also a strong advocate of mostly raw diets (75% is his ideal figure for raw foods intake for those with conditions like ours, based on my phone consultation), and he's also very open to supporting a vegan diet in general as being ideal, too. Hope this helps a bit!



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