ECHO therapy is an experimental procedure involving eye drops using the drug echothiophate (formerly used to treat glaucoma). To read a discussion on this subject with researcher Dr. Gerard Nolan and members of MDList, see the MD Support Clinic.
Cliff (Stargardt's disease):
September 8, 2003
I saw the doctor today. He did the traditional refraction tests, a color perception test, a visual fields test and a fluorescence angiogram.
After he had given me the drops to dilate my eyes, he put me back in the waiting room while they went to work. Based on the preliminary results of the tests he did, he said he feels that I will gain 20/20 back with no problems and be able to hold it there. I received the drops he is using with instructions to read for 20 to 30 minutes, use one drop in the left eye, and then lie down and get a full night sleep. He recommends that you not do both eyes at the same time, as apparently there is sometimes a side effect the morning after the drug is used that may led to some short term (something through the morning hours by the description of it) issues such as fuzziness, etc.
We will do the right eye as well, but not tonight. I have a 9 AM appointment to follow up and see how things do after the first treatment. According to him, the results will be immediately apparent. Patients who have lost color vision have regained some color perception. Folks who have lost lines of vision will regain lines of vision. His theory is that this treatment improves the biochemical functions of the eyes.
The cost of the visit (when you have no insurance that will cover the costs) is to be $500. The drops themselves come in a small vial that contains approximately 12 drops total. The vials are $35 each. Tomorrow, we will find out whether this trip and the costs for the office visit are money well spent or were a bad bet on the roll of the dice.
September 9, 2003
Per instructions for use, I spent about a half hour reading last night, then used the drops and went to bed as directed. Seems strange, but the combination is important according to the doctor.
When I got up this morning, I noticed a few things. He had me only treat one eye last night (I do the other one tonight). When I got up this morning, the pupil of the treated eye was slightly smaller. Not a lot, but if you were looking, you could see it. And as promised, there is measurable improvement in visual acuity.
The doctor gave me a copy of the angiogram that was done yesterday. He indicated that he had found that with other MD patients, the angiogram had given him a baseline to measure what was happening. He has been following some patients for 3 years, and has found that under this particular treatment regimen, the retina appears to stabilize, and further damage is halted.
The drug that he is using to accomplish this is echothiophate iodide. This drug was previously used for treatment of glaucoma. Traditional dosage for that application was a 0.125% dosage. Due to some side effects, use for glaucoma was terminated.
The dosage being used for this treatment regimen is much lower...0.015% administered once every 4 days prior to sleep. The current source of the drug is Wyeth-Ayerst out of Philadelphia, Pennsylvania and is produced under the name Phospholine Iodide.
Currently, the drug is not being manufactured. This is a problem the doctor is struggling with, as the benefits he has found using this therapy are such that the current supply can easily be exhausted. He has stated that public pressure for the production and commercial availability of the drug will help. Apparently the reluctance on the part of the drug company is a multifactored issue stemming from (1) the patent has less than 3 years left on it, (2) the company really doesn't want to participate in a product of this application, and (3) apparently there may be some perception that there will not be sufficient demand to make the production profitable.
While my results are still early, I'm very encouraged. I went back to 20/20. My vision prior to going up there has varied widely. On some days, it would measure out very nearly normal. Others, it would seem that the bad eye was about 20/70 or worse.
I'm noticing a lot of small changes. Like when I woke up this morning, I could read the clocks in our bedroom without having to squint or use a pinhole created with my hand.
Sharon (Cone-rod dystrophy):
October 6, 2003
On Saturday morning after seeing Dr. Nolan my hopes were confirmed! My distance vision had not only gone back to the level of 20/800 but had improved to 20/400. The near vision which had been fuzzy but visible was stronger and clear and instead of seeing part of the numbers on the chart I saw them bolder and completely! When he showed me the color chart again (this had been given to me on Thursday before the drops), I was surprised to actually see the circles on the page with color, when previously unable to see that there were even color circles on the page! I noticed my navigational skills much improved and that I was noticing things that I did not even know were there as I observed my surroundings. Surprisingly enough, I found that my ability to see in darker environments was improved, even though the pupil was constricted, giving a slight dimming appearance.
On our trip home, I noticed so much more ability to see things, and I even saw a red stop light during the daytime. Usually I would only see them at night or on cloudy days!
October 8, 2003
Today while testing my near vision, I am seeing some numbers on the 20/200 line!
October 10, 2003
Yesterday I experienced an unpleasant ache in my right eye after the drop was administered the night before. I have been in contact with Dr. Nolan and we are working on treatment frequency. I think I misunderstood about the days in between treatments. Anyway, my vision was still improved, but it hurt to read. It was like a muscle strain...I am still trying to figure out how much of it is due to my lack of sleep or the lingering cold and sinus pressure I have. So we will experiment with the times of treatment and see what happens.
I still can not read the 20/200 line, and the numbers I guessed were not correct. Yet I still can almost see them! It is frustrating, but in a good way, given that I couldn't even see that they were on the page less than a week ago.
Yesterday I was able to see my son's smile from much further away than I usually can. It was hazy, and I had to draw closer to confirm that indeed I was seeing what I thought I saw! On Wednesday night at my class, I noticed that I could see the water glass clearly and the light reflecting off the water from the overhead light. Usually, I need to kind of remember where I placed the glass as it is clear. The most exciting for me was that I was able to locate and serve myself refreshments at break time instead of asking someone to get it for me!
This morning I was lying in bed prior to getting up and noticed that I could see all three windows from my vantage point. I could see my cat on the bed in the early morning light, which in the past I had to rely on feel. I could read the name on the cereal box this morning. Yesterday, I could distinguish between my navy blue sweat shirt and my black sweat pants, an impossible task before.
I don't know if I will continue to improve, but I am expecting for more and very pleased with what I have gotten!
October 13, 2003
I mentioned a few days ago that I was backing off the treatment frequency due to some sensitivity to the drug and because I frankly did not understand, at first, the schedule Dr. Nolan wanted me to be on. I delayed my third treatment to the left eye for two extra days and saw a slight deterioration of previous gains. Things were just as readable on the eye chart, but seemed to be more washed out, like that familiar veil that we often see over things. The three-window observation from my bed took some slight maneuvering to get the same effect.
Consequently, I was expecting to see little benefit at church yesterday. Well, to my surprise, I was able to see the stairs up to the stage, I was able to see movement on the overhead projector while a film was being shown (this in contrast to not even seeing the screen), I was able to se the offering plate being passed ALL the way down the isle, and the communion plates as well! I could see the individual cups in the drink offering plate and best of all, I could see the little holes in which to return the cup! I have looked for these before and just had to find them by feel. The whole sanctuary seemed brighter, and it was easier to see handshakes and people in general. I was very encouraged!
Colors seem to be gradually improving. I had expected them to jump out at me, but instead, they are steadily becoming truer. I really can't explain this, but they are just there. As with many of my observations, what wasn't there before is now!
October 14, 2003You all know that I have been struggling to see the 20/200 line on the near vision chart! Well, today I saw four numbers. They were hard to see clearly, but I could see them. I may not be truly 20/200 near vision, given that I had my nose right up to the page, just the right lighting, and did miss one character, but I couldn't even see anything on this line just a week ago!!!!!
October 16, 2003
I am still experimenting with the dosage frequency and have observed some interesting things. I have waited almost a week between doses in my left eye and found that my vision deteriorated some in both eyes. Upon treatment, the day after receiving the drop in the night, my vision in my right eye improved, but the vision in the left eye was not great (although still probably somewhat improved over no treatment).
On the second day after the dose, my right eye improved even more, thus the reading of the 20/200 line. Yesterday's vision continued to show improvement in the right eye, even though the left eye was the one that was treated. Last night I dosed the right eye and again am experiencing a deep ache, though not as bad as last Thursday. The vision in my left eye is greatly improved this morning!
Observations the past few days are as follows: Colors are continuing to be truer. The past few mornings I was noticing the individual pieces of cereal in my bowl. I told you last week that I could read the name on the cereal box...well it is darker, clearer, and I discovered an outline of a heart on the box, as well.
Now here is the biggy! (Does it get any better than this?:) I could see my money yesterday while shopping! In the past, I could sometimes see the large 5 and 20 in the right light if I tried. Well, I saw the 5 in the car, and I discovered that the 10 I had was readable, too! Folks, I didn't EVEN know that the 10's were printed in large print, too!!!
Little things continue to pop out at me and I could go on and on but I think that you get the idea.
November 1, 2003I have to disagree about the pinhole effect, for my vision continues to be better after the pupil is no longer constricted. In fact, I struggle a little bit the day that it is constricted. My returning color vision cannot be because of the pinhole effect either. Also, I have found that my peripheral vision has cleared up and the blind spot has shrunk. I have actually gained vision that was not there prior to the treatments. I am not sure how the pinhole effect would even work with someone as blind as I...meaning the total area of affected vision is large.
I confess that I am ignorant of this pinhole effect in the first place; but it stands to reason that I would not have the benefits first noticed if the pupil was no longer constricted?! All I know is that I am able to function better and am enjoying my surroundings in a way that I have not before.
November 10, 2003
First of all, my gains have been verified, and even more has been established. I was able to see the distance chart from 8 feet, instead of 3 or 4 from the last time, and I was able to see a simple color test. The most exciting news was that there is more blood flow to my retinas, and the angiogram was painful this time! I say painful because, as you all know, the bright lights are somewhat painful. Well, last time they were not painful at all, and I knew that was not a good sign. I was having a much harder time keeping my eyes open for the bright lights this time!!!
My sister Sandi's retinas were not as deteriorated as mine but did have disintegration, which, like mine, has left holes in them. She also had peripheral damage. She started out with better vision than I, though, and gained several lines on the near chart. She said she was able to see a few of the brighter stars after the second drop.
My brother Marty had the best retinas of us all. He has no effected peripheral and no holes in the retina. Dr. Nolan was the most hopeful for him. He saw the least amount of gain, which was puzzling. The one difference was that his eyes did not show a constricted pupil after the drops either day. Dr. Nolan said that this was not absolutely essential, but may have indicated that the drug was not working for some reason. They opted to try the higher strength drop when he returned home last night. My Mom called and said that he did have a small pupil this morning and that he thought he was seeing some changes. I will keep you updated on his progress.
November 11, 2003
For an update on my brother Marty...Dr. Nolan had him increase the drop to the highest level he uses, and the very next day (Monday) Marty was able to see the 20/50 line on the near chart! Previously, he was able to see only the 20/200 line. He says everything seems to be larger, and the right eye is catching up today. He will do another drop tonight in the right eye.
My sister is also seeing continued improvement. She was able to see the bar codes at the volunteer job she does and was able to cross them off and file them. She also read the price tags on several items at Walmart. She saw the color orange and is able to navigate without following others.
Needless to say, we are all rejoicing at the news and at the miracle of restored sight! I am still praying for all of those who are scheduled to go and for those who are currently watching for improvement.
Leslie (mother of Drew, 11 years old with Stargardt's Disease):
October 17, 2003
We returned from Connecticut late Wednesday evening. Drew's right eye was treated on Monday, and his left eye was treated on Tuesday. When he was tested on Wednesday, his color vision really hadn't improved much, and his near vision improved slightly, according to the eye chart. Drew, however, tells me he hasn't really noticed any differences. He did have a severe headache yesterday, so maybe that got in the way of seeing any improvement. I do believe that Dr. Nolan's treatment works, and that for Drew it might just take a little longer. I also think that his large scotoma might be getting in the way of him actually noticing any improvement. Sharon's experience is keeping me hopeful that we will eventually notice a difference in his vision. I also keep reminding myself that there is clearly improvement, as measured by the eye chart.
I hestitated posting his progress to date, because I didn't want to disappoint anyone. But I've realized that our experience is just one of many, and that there is still a fairly good chance that he will eventually notice a difference. This treatment is a huge step in managing the symptoms of Stargardt's and other types of MD. Dr. Nolan is a wonderful man, and God has given him the knowledge and ability to help so many people. This is truly a very exciting discovery. I will continue to keep posting Drew's progress.
October 28, 2003
Drew had some testing done at the low vision clinic at his school last week. He was able to pick out two numbers in the Isiahara book, and his near vision also showed an improvement. Two different people conducted the tests, so the results aren't as accurate as they'd like. They are going to retest him in early November and use all the same charts, distances, etc. to get a better reading. I am using the chart Dr. Nolan gave me, and Drew can see the 20/70 line when it is about 3 or 4 inches away. He still has the blind spot, but he has mentioned he is seeing things more clearly close up. Unfortunately, he is 11, and he doesn't always want to cooperate with me when I want him to look at the chart. He is also getting tired of me asking him about any changes. It's obvious now that he has seen some improvement, and I can only hope that he continues to see more.
October 20, 2003
My visit a week ago was a wonderful and exciting visit. Dr. Nolan is a very warm and caring man, and Echo is a gift from God. My color is back, my reading vision is back, and things are brighter. I can read large print with no help, and with 3x magnification, I can read restaurant menus myself. Way cool! I can see a few letters on the 20\30 line from about 12 inches. Every day, I see something I haven't seen in 20 years, unless I used a 60x low vision aid. My life has changed, and each day gets better.
October 23, 2003
I have macular degeneration, my right eye is wet and my vision is 20/400 or something in that area. My left eye is dry my vision was 20/30 in the left eye. I visited Dr. Nolan in August. He gave me a complete examination and determined that the ECHO drops could help my left eye. I have taken them for the past 3 months. My vision has improved in my right eye, I'm not sure just how much. My vision in my left eye is now 20/25 plus about 4 letters in the 20/20 line. I can now thread a needle without the use of magnification. I can't tell you what a wonderful feeling that is. I can drive without fear, as I see sufficiently to protect others and myself.
My sister, who has a different retinal problem with her right eye, has also seen Dr. Nolan, and she no longer plans to have surgery. Her vision in her right eye was 20/200. Since she has seen Dr. Nolan and has received the ECHO drops, on the second week of taking the drop just once a week, her vision is now 20/30 in the right eye. She sees everything as she did over 6 years ago.
I feel as long as I continue to take the drop once a week, I will continue to have the vision I now have, and perhaps it will increase in the left eye. I have a bit of hope for my right eye, as well. I do not put the drop in my right eye there is a bit of flow over effect, and even the eye that is basically blind does see a bit better.
October 31, 2003
Many people feel that there is an improvement with the use of the drops. I myself am using them and there is an improvement. It is my opinion that the improvement is largely due to the pinhole effect of a constricted pupil. An improvement in black-white contrast is also evident. This is caused by, in my opinion, the treated eye receiving less light. Put on a pair of sunglasses missing one lens, and you can create the same effect. I have noticed that after the ECHO wears off and my pupil is no longer constricted, all improvement is lost. I am very interested to hear what others think.
November 6, 2003
There is an improvement! Here are some details. Pre treatment vision, left eye: could see movement when a close vision card crossed a light source. At 1.5 feet, I could see the top right corner of the chart as a smudgy light source. Right eye: could see hand movement within 2 feet, and couldn't count fingers. At 1.5 feet, I could tell that there was something on the chart, but had no idea of what the character was.
First day after drop in right eye: I thought that things were clearer as I usually feel like I'm in a fog (no jokes please), but it was a nice sunny day. In the doctor's office: left eye could see the top half of the wall eye chart as a light source. Right eye could see the large character at 1.5 feet.
I saw Dr Nolan 4 times and had a total of 3 drops. The last visit was Sunday morning at 9:00 AM (this should tell you something about Dr. Nolan). Left eye with wall chart at 1.5 ft: could see the whole chart, and could tell that there was something on it, but couldn't see exactly what. I could see that there were markings on the close vision card, but could not discern more. Right eye could see the large character 3 feet from the wall chart (yahoo), and could figure out the top characters on the close vision card - definitely a struggle but a great start!
There are more things that I noticed, which are not measurable. Both at night and during the day, lights and light sources used to streak into one another. (Something like rainy nights when car lights and street lights shimmer.) I don't have this any more. The lights in my kitchen are separate and more defined. I will be keeping a journal of what's new in the increasing vision.
From a note to Dr. Nolan sent Sunday, Nov. 9, 2003
I am struggling to describe what I see, but I'll start with the little things. Last Wednesday, I noticed that I could see the 5 on the Canadian $5 bill, haven't seen it in years. It is much bolder than the $20 which I also was able to pick out. The $10 is still a challenge. I used to have what is termed starbursts, but I no longer have that. The pot lights in my kitchen are separate and distinct, no longer streaking into each other. Things in general are clearer. I can see the lines of the white wooden blinds that we have in various rooms in our home. I recall previously going to the sliding glass doors in the dining area to angle the blinds open only to find that they were open. Now I can see the lines from the kitchen area and know that they are open (approx. 30 ft.)
I cannot report any improvement in reading the small print card, but I have started to use my CCTV again. It's high magnification on a 17" monitor. I use white on black background, which I have found to be better contrast for reading print. I will experiment with your small print card on lowest magnification and see what I can see over the next few weeks.
Now for the weird stuff. I feel like my vision is patchy, like a disjointed jigsaw puzzle. There are bits of clear vision mixed with haze and as always my personal light show of little flashing lights. What are new are the bits of clear vision. I think I'm just not used to it, and things appear funny or different, especially when I am on the move. Also, I have caught myself shutting my left eye (less vision) when concentrating or focusing on some activity like dinner preparation. For example, I just boiled some eggs. I saw the water bubbling - that's new. Previously, I'd just go by noise and the lid jumping around! But to see the water, I noticed that I closed my left eye and moved my head to catch the light on the water.
I don't think that this closing of the left eye is a good idea, so I am stopping myself as soon as I notice it, or perhaps I should give the left eye equal time and try to focus with my right eye closed. The 2% drops have not presented any distress or difficulty. The solution seems quite thick, and we have trouble getting the drop out, so we are storing it upside down in the fridge for now.
November 14, 2003
Our trip to see Dr. Nolan has proven to be very successful so far for our 17-year-old son, Lesley.
Lesley was reading at Jaeger line 20/100 (line 4) only 1 number on that line. The first morning he read two lines better, and yesterday, after stepping up the dose in the right eye (per Dr. Nolan), he was reading 4 lines better. He read the 20/30 line yesterday, which is about the size of footnotes in a standard Bible or Dictionary. WooooHooooo. He's really doing great. He also noticed that he could read the clock in the car from the backseat, and he hasn't been able to do that in a couple of years. Lesley has not had any side effects at all. Not even a headache!
All in all, I don't think anyone would ever regret the ECHO treatments or their visit with Dr. Nolan and his staff. We love Dr. Nolan and his ECHO treatment, and I know it will prove to help many many more people successfully.
December 4, 2003
I had [Lesley] read the eye chart, and he read three numbers on the 20/25 line at about 10 inches from his face. YIIIIPPPPPPPPPPEEEEEEE!!! He's really doing great.
December 17, 2003
Lesley's vision has improved GREATLY! After 4 weeks his vision has become clearer, brighter and more detailed. His color vision and night vision and near vision are so much brighter. He is still driving and I ride with him regularly and he drives perfectly. He's reading vision has improved to 20/25. Nearly Perfect...Lesley has had NO side effects at all.
November 30, 2003
My husband has not seen any measurable results. We just received a stronger dose of the Echo and will start using it this week. My friend, who is 73 years, has so far improved his near vision 3 lines, which is awesome news.
May 24, 2004
In the last 3 years my husband has not lost any of his vision. The two years prior, his vision loss doubled. He is doing vitamin therapy, micro current stimulation and the Echo drops. Unfortunately, the Echo drops did not improve his vision. Thankfully though, by the grace of God, something is keeping his vision.