Accounts of Personal Experiences
ECHO therapy is an experimental procedure involving eye drops using the drug echothiophate (formerly used to treat glaucoma).
Cliff (Stargardt 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, 2003
You 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, 2003
I 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 2030 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.
January 2, 2004
My report on the treatment is somewhat mixed. (I am 48 with Stargardt’s). My left eye improved from 20/400 to about 20/50 for reading, but the central blind spot remains the same, and I still must use eccentric viewing. While that is great improvement in clarity of my left peripheral vision, it is not enough improvement to notice subjectively. My right eye has not responded as well to the drops. My right eye has a similar sized central blind spot to the left, but there is a small clear spot in the very middle that allows me to read normal font (only about three letters at a time though). I was hoping that the clear spot would enlarge with the drops, but so far there has been no change in the blind spot. The clarity of the right peripheral has improved, but the central clear spot is about the same at 20/30. With the drops in the right eye, my reading through the clear spot seems more difficult, though I can’t explain why. Maybe it is that there is more eye strain while reading.
Overall, I would say my vision has improved, but it is a small improvement in terms of everyday life. I am in touch with Dr Nolan, and we are trying other dosages for the right eye. Even if there is little improvement, the drops are worthwhile if they slow down or stop the progression.
Cathy (for son Corey):
January 9, 2004
Corey went to see Dr. Nolan on Dec. 29 and 30th. The appointment was a bit upsetting, as we found his vision had deteriorated to 20/300, and at our last check he was at 20/100 most days and 20/200 on bad days. After administering the drops the first night and not getting much sleep in the motel, he had only improved a bit the next morning. We came home and administered in the other eye, and the next day he read 20/100. Yea, things were better, however, within about 2 days, the drug seemed to wear off, and things went right back to where they were.
I agree with some that Echo appears to create the pinhole effect. Corey has very large pupils, and when his pupils are constricted, which is usually the next day and for awhile after, he sees well. Once it starts wearing off, which is before the next dosage is due, vision is not good.
We are increasing the dosage, per Dr. Nolan, on Sunday and I feel we will have good results. If pupil constriction is all we get, and it helps, I am all for it. Anything is better than where we have been.
February 9, 2004
Corey’s near vision continues to stay pretty much the same (20/50 ish) with distance vision we think at 20/100 and doesn’t regret going to Dr. Nolan. He says that the best results from using the drops is that everything is brighter, and peoples faces across the room are clearer and not as hazy, and that he can see the blackboard at school much better. He had hoped that he would get enough distance vision back to be able to drive again. Doesn’t appear that will happen. I think not being able to drive gives him the most stress with this disease. The other issues seem much more manageable. He opted to keep statistics rather than play basketball this year and reports that he can see the scoreboard much better since using the drops.
January 29, 2004
I was diagnosed with Stargardt’s disease 8 years ago. Since the birth of my little boy last July, my vision had taken a big turn for the worse. So we thought we would try Dr Nolan out, and I am glad I did. I can drive still and can see color better, too. I went on the 19th, so it has been a short time still, but very glad I went.
February 5, 2004
I have just been to visit Dr. Nolan last week and had my 1st dose of ECHO on January 29th. It does kind of give you an unusual feeling when you first wake up in the morning, in that it seems difficult to move your eye; but that only lasts a few minutes or so, then is back to normal. I have been noticing an excessive amount of floaters, although it is not the same as floaters I have seen in the past. It is more of a ripple effect.
But all that aside the next morning after I received my first dose of ECHO, my vision improved from 20/800 distance to 20/400 and 20/400 to 20/200 near vision, which was really exciting! I am still experimenting with the dosage. Last night, we diluted it with liquid tear, and that seemed to help. Dr. Nolan said he may need to give me a lower dose. So far, I have treated my left eye twice and right eye once, and it does seem to be making a difference. So far, everything seems to be going well, and everyday is a new experience to see what I can notice new for the day!
February 26, 2004
I have Retinitis Pigmentosa and was diagnosed at age 5 and am now 36. Prior to using the ECHO, I was only able to read the 20/400 line on the eye chart, and now can easily read the 20/100 and some of the characters in the line below that one; but still can not make them out too clear. I have also noticed imrovements in color, which seems much brighter and more distinct. Reading the computer is much easier now, and my eyes do not seem to tire so quickly.
Mindey (for son, Matthew):
February 11, 2004
Prior to the drop, Matthew’s distance vision was 20/100 in the left eye and 20/140 in the right eye. His near vision was 20/40 in the left eye and 20/50 in the right eye. Matthew had two drops in the left eye this past Monday night. On Tuesday am we went back to Dr. Nolan’s office. After receiving the drop, Matthew’s distance vision was still 20/100 in the left eye and 20/140 in the right eye. We saw a slight improvement in his near vision, which is now 20/30 in the left eye and 20/30 in the right eye.
Matthew experienced no side effects. He didn’t notice anything different at all. You can’t really prompt him for answers, because he’ll say what he thinks you want to hear (he’s 7). We only noted the improvement in his near vision from reading the card. I’m not disappointed, as these are still minimal gains.
I only hope the drops halt the progression of the disease, as his near vision is still very good. I’ll continue to post his progress over the next few weeks.
February 26, 2004
I started to notice vision problems in the year 2002. I was diagnosed with one of the rarer forms of hereditary MD called Central Areolar Choroidal Dystrophy (CACD).
I have been using the Echo drops in both eyes for a couple of weeks as per Dr Nolan’s instructions. First impression was that the drops had not made any difference to my vision. Over the next few days I thought that maybe things looked brighter and sharper but,in truth, I think the improvement noticed is bordering on the imagined. Colour vision is much the same.
I will finish one bottle of drops, which should last about 4 weeks and then have a break of a few weeks before starting the second bottle. This should tell me if the drops are really having any effect. It may be easier to tell if my vision actually worsens after stopping the treatment.
I was not expecting a dramatic improvement, but I thought maybe a small improvement would show the drops are having some effect. The big question for me is whether Echo has a beneficial effect on the longer term progression of the condition. Will the treatment slow down or even halt the degeneration?
April 5, 2004
I used one bottle of .015% strength drops which lasted just over four weeks. I applied one drop to alternate eyes every other day. Initially, I thought that maybe things looked brighter and sharper once the side effects had worn off the day following treatment. However, I now think that this was either imagined or a short term effect. I have not used the drops for about two weeks now, and my vision has not changed noticeably without the drops.
I have another bottle of .015% drops, so I may resume treatment but increase the dose by using two drops instead of one and see if this makes any difference. Verdict so far is that the Echo drops have no beneficial effect for me.
May 24, 2004
After using the .015% drops and not seeing any improvement, I have been trying the .02% drops for the last 3 weeks. I still see no improvement. If anything, my vision is worse due to the side effects of dim/blurred vision which lasts about 18 hours after each treatment. Today I went for my 6 monthly check up with my Ophthalmologist and as usual, I was given a field test. I asked for a copy of the test results which also include results from earlier tests prior to starting the Echo drops. The field test did not show any improvement over previous tests and the doc confirmed that there had been no improvement.
This is very disappointing as even a small improvement would indicate that the drops are doing something positive. It is still possible that the Echo drops may slow down progress of the condition, but unless the proposed clinical trial includes a long term study, it is still going to be a matter of faith.
On balance, I don’t think it is worth continuing with the Echo drops. For me, at least, they are not having a beneficial effect.
February 26, 2004
(To Geoff:) I have been on the Echo drops since about Thanksgiving. I have cone rod dystrophy and I am 45 years old. It sure sounds like we are having the same experience. The color changes, the eye chart etc. I am happy with the way things are going, I hoped for more, but the drops are what they are. Having about the same vision as you, and close in the type of disease, I’m sure you would agree, any improvement is a big deal.
March 10, 2004
I have a wonderful 17 month daughter who has been completely blind since 6 months of age. She was diagnosed with Leber’s Congenital Amaurosis.
We found Dr. Nolan and were very skeptical about eye drops helping her blindness. However, I went with my gut and took Maddie to Connecticut.
We have since witnessed a miracle. His ECHO treatment has changed our entire household. Instead of teaching Maddie how to get around in a dark world, we are now filling her toy chest with bright beads and lighted toys. She has not only began focussing, she is even tracking objects. This is from a child who could see NOTHING. She has even grabbed for her pacifier twice.
Dr. Nolan is a blessing to us. We thank God each day for finding him. Although our child may only see some outlines of objects, I go to sleep each night knowing my child will be alright in this world. She now sees light and may even see my face one day.
March 23, 2004
My father, my wife, and I have just returned from Farmington, where we saw Dr. Nolan on Monday, March 15. He carried out a vision test. My close distance (reading vision) was 20/300. He carried out a peripheral vision test (found to have blind spots), a color vision test, (90% color vision), and an angiogram. My left eye was the better of the two. I was told to treat the left eye with the ECHO drops Monday night. My father had the same tests, but his retina has substantial damage. He was asked to carry out the same regime as myself.
On Tuesday morning I noticed some difference in my reading vision, and my father noticed the foggy image was not as foggy. When we went to see Dr. Nolan on Tuesday, my eye test showed my distance vision (20 feet) to be as it was on Monday. Closer (10 feet) vision had improved by 3 lines, but my reading vision had improved to 20/100 in the left eye. My father could make out the first letter on the vision test at close distance that was not seen by him on Monday. We were told to treat the right eye Monday night.
We were told to administer the left eye again on Thursday again. When we visited Dr Nolan on Friday, before we returned to Britain, my eyesight in both eyes had improved. For 20 feet distance there was an improvement. 10 feet was improved by 6 lines, but the greatest improvement was in my reading vision from 20/300 on the Monday to 20/70. Color vision went to 100%.
My father had an improvement that he can make out objects like a clock and picture frames on the wall, which was not possible previously. We are continuing our treatment and will keep you posted on our progress. We had lost all hope of improved eyesight, but Dr. Nolan has given us a new lease on life.
Gretchen (for Annie):
March 31, 2004
Good news for Annie! We arrived back home in Minneapolis last night after seeing Dr. Nolan in Connecticut. When we arrived at Dr. Nolan’s office on Monday morning, Dr. Nolan and staff performed many eye tests on Annie. Annie was diagnosed with Stargardt’s disease the end of August. She was 20/120 in her left eye and 20/100 in her right eye. Mid February her eyes worsened to 20/200 in both eyes. When Dr. Nolan checked her eyesight on Monday, her left eye had worsened to 20/300 and her right eye 20/200. That night, she read for 20 minutes and then we put 2 drops in her right eye (better eye), and then she was to sleep for 8 hours uninterrupted. The next morning she couldn’t see any difference, but we had also learned that sometimes it can take awhile. We returned to Dr. Nolan’s office, and when she read the eye chart, her left eye could read at 20/200 and her right eye 20/100 (minus one or two as I recall)! She remarked that colors seemed brighter. We had to head to the airport right away, and sitting at the airport, Annie remarked that there wasn’t as much glare around lights. Last night, she received her 2nd dosage. This time, to be put into the left eye, with only 1 drop at a slightly higher dosage. This morning, she was tweezing her eyebrows and said she could see her eyebrows better! So in a nutshell, it’s working!!!
Dr. Nolan and his staff are outstanding people. Incredibly nice and helpful! We are to return in 6 weeks. I wanted to update everyone and will continue to do so and to also thank everyone for writing in, because we would not have heard of these drops had it not been for this website. We are very excited and grateful. We will continue to update!
May 8, 2004
I have triumphantly returned from my visit to Dr. Nolan. My vision has improved dramatically. I was diagnosed with dry MD of my left eye in November of 2003, but after the first ECHO application, my vision is better than it was several years ago. The day after the first application of ECHO drops, I was able to read the newspaper without glasses, something I had not been able to do for 13 years prior to my diagnosis. Vision in my affected, treated eye is much better than in the unaffected, untreated eye, except that everything in the affected eye is much darker.
Lesile (for daughter, Melissa):
May 11, 2004
Just wanted to let you all know about Melissa. She actually is home from school today with a severe headache. One of many that she has had since she started using the drops. Her pupils don’t seem to be constricting like I thought they were suppose to, and she says she doesn’t notice any real improvement. She says the headaches are the worst. Especially when she tries to read. We have another appointment May 21st (her birthday). Hop efully, Dr. Nolan will be able to help us.
Sep 29, 2004
I have hesitated to write to our group about my ECHO experience because I didn’t want to say anything that might keep someone from possibly getting help from ECHO. However I think I should talk about it now. My experience has been disappointing.
My daughter and I flew from CA to CT in early February. We put one drop of the .015 ECHO in my right eye. The next day in Dr. Nolan’s office my right eye stayed at 20/40 but the color vision improved from 25% to 75%. My left eye went from 20/30 to 20/20 plus. We were elated. However, when we returned to CA I did not have that improvement.
We again flew to CT in early June. At that time my right eye tested 20/70. Dr. Nolan explained this as that on different days our eyes see differently.
Last week I saw my retina specialist. My right eye had worsened to 20/90. My left eye was 20/30. I told my RS that I had doubts about the treatment. Before I went to CT the first time, I gave my RS copies of Dr. Nolan’s studies and told him I was going to see him. I wanted him to know about it in case I had any problems when I returned to CA. At that time he had reservations about the treatment but knew I was going to do it and wished me good luck. All along he has said he never could understand how it could work. He also has had a concern that the action of ECHO on the pupil can eventually wear out the muscle (not his scientific explanation) and eventually an RS can’t dilate the pupil to examine the eye.
When I commented that Dr. Nolan was charging for the treatment, he very quietly said “A physician should never charge for an experimental treatment.”
I am in a quandary. I am afraid to stop the drops and I am concerned about continuing. I have had a lot of trouble with glare since I have used ECHO. I have also had the “dimming” which is pretty scary when you don’t know what it is. Also tearing and puffy eyes.
Sep 29, 2004
I took my 7 year old son, Matthew, to see Dr. Nolan, too. He took the drops for 4 months, and we saw no improvement. His vision was 20/100 and 20/100 (L and R eyes). At his next appointment at Hopkins, which wasn’t until a good two months after I had stopped the ECHO drops, Matthew’s vision had improved to 20/70 (or he was having a good day). We saw no benefit whatsoever.
Sep 29, 2004
I saw Dr. Nolan in June 2004 and have been taking the drops since then. I don’t think my retina doctor would recommend taking them and I have not informed him about this. I have dry MD and a scar (from macular hole surgery). I think the eye with the scar got a bit better and the other one a bit worse. I asked Dr. Nolan whether vision in his patients ever got worse. His answer was NO. I’m also very nearsighted (corrected with IOLs and glasses) and it might be that my vision got worse because of that.
Sep 29, 2004
I saw Dr. Nolan in late January 2004 and have been using the drops since that time. I am 36 years old with RP, and initially did notice some improvement in my vision from using the drops. After my first treatment, my vision improved from 20/800 distance to 20 /400 and from 20/400 near to 20/200. I have also noticed some improvement in color vision and in night vision. Although I must say I too have had a lot of problems with the extreme dimming effect that the drop causes in the treated eye for the next day or so after using the drop. My left eye seems to do a little better, the dimming is minimal and usually does not interfere much with my working on the computer each day. Although my right eye has never done too well on the drops and the dimming effect is so extreme that I have a very difficult time reading the computer screen for at least 2 days after treating that eye.
Recently, I have started only treating my left eye once a week and not using the drop at all on my right eye. I had asked Dr. Nolan about the dimming effect a few times, and was always told to dilute the drop with liquid tear, but that has never seemed to have made much of an improvement.
I am still continuing with the drop, because as I said I have noticed some improvement . . . It has definately helped to keep my eyes from straining, as they had before using the drops, and I have slowly begun to notice some improvement in night vision, although it does seem to differ from day to day, depending on how soon after the eye was treated.
I have seemed to notice more of a glare than I had previously. I have tried several different types of sunglasses to help cut back on the glare, but it also cuts back too much on the light I require to be able to have the best vision.
I am planning to continue treating my left eye for now and may eventually try the drops, possibly in the lowest dosage on my right eye to see if there can be any improvement there. I am currently using the .015 dosage which I believe is the 2nd lowest dosage that Dr. Nolan prescribes.
Sep 29, 2004
I have been using the Echo drops for almost 1 year. I am very satisfied with them. I have had no problems once I got the dosage schedule worked out in a way that worked best for me. I still have variations in vision i.e. good seeing days and bad seeing days, but the overall effect on my vision and mobility is definitely worth it for me. It is important to follow the instructions for best results but I would recommend that you try it!
I have found the good day bad day flux is much less, and the blind areas are improved to the extent that the interference between eyes is greatly improved when I am current on my drops. I can really tell the difference when I have not taken them on schedule.
As far as charging for the treatment, Dr. Nolan only charged me for the testing, which was reasonable for the amount of tests and the time that he spent with me (both times). He came into his office on our scheduled appointments, and then on Saturday and Sunday morning as well, to check the progress. I pay a minimal fee ($35) for the drops, which last me about 6 weeks. I know for a fact that he has done the testing for free for those who have not had the means to pay. My follow up visit did not cost me anything either, even though more tests were performed. This is experimental, but he has not asked anyone to try it. I called him.
I realize that this doesn’t work for everyone but for me, my vision improved, my test results improved (showing more blood flow to the retina), and I have had little to no side effects in this one year trial. I had nothing to lose, as my vision was 20/800. I improved and maintain 20/200 near vision and 20/400 distance vision. Of course, when one’s vision is that poor, these numbers may not translate in huge practical gains. In other words, I am still legally blind, but the improvements in color and mobility in dark or bright light have made my life easier.
Sep 29, 2004
I am also a user of Echo therapy for about a year, and I have had about the same results as Sharon. However, for me sometimes less is more. I don’t try to stay on a schedule, that seems to get me in trouble. Things like fogginess and glare are the biggest issues and that seems to happen when I have too much. Too much happens when I put the drops in or if they go in too close together in days. I seem to have a good handle on how the drops work for me. I would advise anyone to use the drops when they think they need them not on a pre-planned schedule. What was nice to hear, was that a lot of you have experienced better color. Me too!
Oct 8, 2004
Lesley is still on the ECHO drops. Next month will be a year that he’s been on them. Hi s vision has maintained 20/70 with contacts. Before the drops, his vision was 20/200. He’s in college and majoring in Computer Programming.
Feb 11, 2006
I would like to share my visit to Dr. Nolan. Dr. Nolan is very kind hearted and he explained every thing in detail and he finally diagnosed [my son with] Stargardt’s disease. Results are as follows.
January 30, 2006. Best EDTRS log Mar distance acuity (Snellen equivalent) right eye was 5 feet/ 40-2+2 and left eye 5 feet/100-2+2 fixation. Best near acuity (Snellen equivalent) was right eye 20/100 and left eye 20/160+2 at 3 inches distance. Color vision right eye 0/10 and 0/10 left eye no control.
1 drop every alternate day was advised and the results showed some improvement details as follows.
On February 3, 2006. Best distance acuity EDTRS log Mar (Snellen equivalent) was right eye 5/40+2 and left eye 5/63-1+2 eccentric fixation. Best near acuity were right eye 20/80 and left eye 20/125 at 3 inches distance. Color vision was right eye 2/10 with control and left eye 1/10 with control. Dr. Nolan told us if Muhammad stops these treatments, vision may deteriorate. Dr. Nolan told us to follow-up after 3 months.