Expanding Sight

2011-06-03T12:38:00.000-07:00

2010-08-31T07:06:00.001-07:00

Assistive Technology

2008-11-09T13:52:00.000-08:00

Below is a link to assistive technology for those with low vision. You may be able to have the costs of purchasing some of this equipment defrayed by yoru local state rehabilitation agency.

http://www.mdsupport.org/resources/techproducts.html

Lutein Supplementation and RP

2008-11-04T12:22:00.000-08:00

Below are the results of a study on Lutein supplementation and RP. This is not news, the late Grace Halloran advocated this twenty years ago. However, this is the first time a formal study has been completed. Grace advised me to do this almost ten years ago. I feel, if I had been disciplined and stayed the course, my vision would be much better.
http://www.ncbi.nlm.nih.gov/pubmed/16759390?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

2008-10-07T14:17:00.001-07:00

http://ghr.nlm.nih.gov/condition=neuropathyataxiaandretinitispigmentosa

Lipid Disorders and RP

2008-09-29T13:18:00.000-07:00

There is a connection between the amino acid taurine and the abosrption of fat soluable vitamins, like Vitamin A. I remember reading somewhere, years ago, that RP is associated with lipid disorders. I also know of a naturopath who does blood work on a wide variety of people who have a variety of eye conditions. He has stated that, without fail, there are blood sugar abnormalities.

With regards to lipid processing, This makes sense. Faulty uptake of the amino acid taurine would lead to the malabsorption of Vitamin A, This leads to a breakdown of the chemistry needed in order to maintain retinal function which leads to cell death of the photoreceptors....Explains why Berson found that mega supplementation with Vitamin A has some impact on maintaining visual function some of the time. However, mega supplementation does not get the job done nor does it addres the underlying metabolic deficit which makes it necessary.

Taurine and Retinal Disease- Patent

2008-09-17T18:39:00.001-07:00

http://www.wipo.int/pctdb/en/wo.jsp?IA=US1998026106&DISPLAY=DESC

http://www.biomedexperts.com/Profile.bme/1110527/AM_Petrosian

Petrosian's theory on the relationship between taurine and fat-soluable vitamins essential for vision:

http://www.ncbi.nlm.nih.gov/pubmed/11128549?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Would have been nice if they had not tested tuarine along with both Vitamin E and Dilitiazem, but interesting all the same:

http://cat.inist.fr/?aModele=afficheN&cpsidt=13940577

Phytochemicals

2008-09-08T19:14:00.000-07:00

http://www.phytochemicals.info/

Two books on my wish list:

http://www.amazon.com/Nutrigenetics-Nutrigenomics-Review-Nutrition-Dietetics/dp/3805577826/ref=sr_11_1?ie=UTF8&qid=1220925547&sr=11-1

http://www.amazon.com/Phytochemicals-Nutrient-Gene-Interactions-Mark-Meskin/dp/0849341809/ref=sid_dp_dp

http://www.ncbi.nlm.nih.gov/pubmed/17045449

Dr. Amy Yasko claims to already work with nutrient-gene interactions in her practice. Hmm.....She could be ahead of her time or making false claims. Either way the premise is interesting.

Beauty and the Blind

2008-08-21T18:35:00.001-07:00

A touching article about a woman who, after losing her sight, still is profoundly struck by beauty.

http://nfb.org/legacy/bm/bm03/bm0306/bm030611.htm

I ran across this article while researching something unrelated. It spoke deeply to me. Recently, I had a dream in which I was asking God about human suffering and pain. One of humanity's ongoing existential struggles, no doubt. Being human, I was asking God about my particular struggle, which, in the scope of human suffering, is truly nothing. But, I digress.

In this dream, God shows me a caterpillar inching its' way up a green stalk. He says, "That is you," I looked at the caterpillar make its' way, painfully slowly, up the green plant's stalk. He asked me, "What happens if the caterpillar turns around?" I answered that, I guess, it would just return to the grass. He agreed and then asked me to watch the caterpillar once more. So, I did. It reached the end of the stalk and made a cacoon. After being in total darkness, it emerges as a fragile, stained glass, backlit, ethereal looking butterfly. It was the most fragile and finely crafted glass I have ever seen, yet the creature was animate, flitting about in the night sky. Its' delicate perfection was apparent not only in its fragility but the incredibly intense colors: greens, violets, vibrant shades of orange contrasted by the coolest of electric blues.

Later in the week, my daughter went to her favorite art studio with her babysitter. She came home and gave me her creation. She said, "Look Mama! A mariposa for you!" She created a gorgeous, colorful butterfly whose vivid oranges, violets and blues are simply glorious! Did she overhear me mention the dream to my husband? Doubtful, but I suppose it is possible. Does it matter? Not at all...

I find a little bit of HOPE to be similar to putting a small amount of food coloring in a glass of water. It does not take much to color the water to an intense hue. Hope is the same way. It does not take a lot to transform an existence in to a beautiful, vibrant life regardless if one can perceive the colors or not.

Swimming Blind

2008-08-19T14:46:00.001-07:00

http://www.cbn.com/spirituallife/devotions/aspin_swimmingblind.aspx

Apocynin

2008-08-16T07:02:00.000-07:00

http://www.answers.com/topic/apocynin-1

Apocynin is isolated from both the kurroa and Canadian hemp roots:

http://riverssourcebotanicals.com/index.php

http://www.tattvasherbs.com/liversupport.htm?gclid=CNrUguiYk5UCFQmdnAodZDAFgw

http://www.vitacost.com/Healthnotes/Herb/Picrorhiza.aspx

http://www.vedaliving.com/store/product_info.php?products_id=103

NO Synthase and RP

2008-08-15T17:17:00.001-07:00

A possible adjunct to antioxidant therapy in RP which targets the underlying cause of excessive oxidative stress in the retina..

http://groups.google.com/group/sci.med/browse_thread/thread/d8c985e6ae69eed9

Antioxidants in Combination Fight RP

2008-08-13T20:16:00.000-07:00

http://www.ncbi.nlm.nih.gov/pubmed/17293057?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Copper Toxicity and RP

2008-06-10T16:30:00.000-07:00

I found the articles below interesting in light of the Vitamin A data from the early 1990s. Zinc is required to metabolize Vitamin A. If copper levels are high, zinc is low, which would explain the need for excess Vitamin A. Supplementing with Vitamin A has been advised for years. However, there are limitations because of its potential toxicity. So, if there were an issue with the metabolism of trace minerals which impact Vitamin A utilization, then there would be some interesting possible therapeutic potential.

Copper Toxicity and RP:

http://www.ijo.in/article.asp?issn=0301-4738;year=1979;volume=27;issue=4;spage=170;epage=173;aulast=Gahlot

Study of American patients showing no abnormality of copper metabolism:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1043173

Relationship between zinc and copper:

http://www.drkaslow.com/html/zinc-copper_imbalances.html

http://lpi.oregonstate.edu/infocenter/minerals/zinc/

Vitamin A and zinc, metabolic relationship:

http://64.233.179.104/scholar?hl=en&lr=&q=cache:2GP9vDa9av4J:www.idpas.org/pdf/2917_Zinc_vitaminA_interaction.pdf+author:%22Christian%22+intitle:%22Interactions+between+zinc+and+vitamin+A:+an+update%22+

Chinese abstract on zinc and RP:

http://www.ncbi.nlm.nih.gov/pubmed/2289582

Taurine is interesting in that, cats deprived of taurine will develop a condition similar to RP over time. In Australia, they accidentally received dog food in bags marked as cat food. Apparently the dog food did not have taurine in it and the cats require taurine for normal vision. They developed a disease similar in nature to what we call RP.

So, some researchers tested the blood levels of RP patients for taurine levels. The levels were normal, but apparently the uptake is not. So something in the pathway involving the metabolism of this amino acid is not functioning. In the post entitled "Successful Reversal of RP", taurine was used.

Also, in developing countries, people will go blind simply because they do not have adequate Vitamin A intake. It is interesting that, to date, the only research that has resulted in a therapy that helps some people, some of the time, is based on large doses of Vitamin A. That seems to be a cue to a metabolic issue (s) at least for some people with the diverse group of genetic mutations that contribute to a full blown case of RP.

Taurine Uptake and RP:

http://www.ncbi.nlm.nih.gov/pubmed/85058

http://www.fasebj.org/cgi/content/full/16/2/231

http://bjo.bmj.com/cgi/content/abstract/66/12/771

Vitamin A and the chemistry of vision:

http://www.elmhurst.edu/~chm/vchembook/532vitaminA.html

Anatomy of the Eye

2008-05-25T19:04:00.000-07:00

http://www.mdsupport.org/anatomy.html

My Acetazolamide Case Study

2008-05-25T12:42:00.000-07:00

I decided to do my own replication of the University College London acetazolamide case study (for more information, see my 2/15 post). This is not something to be entered in to on a whim. Acetazolamide is a hard core drug and I had to get blood work done regularly to monitor potassium levels and red blood cell count among other things. It has some very scary possible side effects including bone marrow stopping the production of red blood cells. It is a diuretic and it is important to monitor kidney function. So, one must commit to regular blood work. As an aside, I wish someone would attach a statistical measure to possible side effects. Then, it would be easier to make educated decisions. For example, if there is some extreme side effect, it would be helpful to know if 5% or 46% people in the clinical trial experienced it. Okay, I am off that soap box for now.

I started my dosing at 250 mg. on April 15th. I slowly ramped up to 500 mg. Then, I went to 1000 mg. for one month. I noticed colors looked brighter. I also had an improvement in my fields. I doubted if anything; other than increased color vision, was happening until I got off the drug. Then I realized that, indeed, it had helped. One would expect it to help the clarity of vision if I had any residual CME.

But, I also noticed an increase in my ability to find things. Do not get me wrong, I was still quite impaired. But, I did not run in to things in my own home. My shins had no bruises and I could wear skirts without looking like I was married to an abusive little person. I did not collide with door jambs. I could find most anything I needed independently. Still, I doubted my improvement. Now, that I am off the medication and have regressed, I notice that it was helpful in ways one would not expect if it simply resolved CME.

So, why did I discontinue using the drug? Well, I felt like absolute…..crud. At first, the 1000 mg dosing was fine. Besides having pins and needles in my extremities, being a little more tired than usual and everything tasting like metal, life was good. Then I started to become very fatigued. Getting out of bed in the morning became an act of will. If I did not have responsibilities, I probably would have spent the day in sweat pants (always my data point for a major case of the blahs). I also started having, shall we use a nice medical euphemism and say “gastrointestinal distress" on an all too regular basis.

So, better vision is not so useful when you feel awful. But, it does make me relatively optimistic about the potential of the Brimonidine Tartrate implant being developed by Allergan. For more information see the post from 4/20.

I think back to everything I have tried, from acupuncture to stem cell implants. Glaucoma drugs to microcurrent……there always seems to be a bit of efficacy to each. I think of microcurrent’s basis in sending an electrical current to the retina. Then, I see the implantable chip which generates electricity and stimulates the retina. Acupuncture is also an electrical process. So, there are some interesting parallels. My fields responded to acetazolamide. If it could be delivered locally, then we would have a more realistic therapeutic option. But, the devil is always in the details.

Now it is time to soldier on and be grateful for the desire to do so. An old friend called me, he is in his late thirties, a single dad and dying of a rare disease for which not ONE clinical trial has been conducted. So, we are relatively blessed compared to many. But, it is only human to lose sight of that when one is losing sight.

Muller Cells and RP

2008-05-23T20:42:00.000-07:00

Scientists at Schepens, at Harvard, have discovered that Muller cells within our own retinas may have the capacity to turn in to various types of cells. According to this study, these cells have the possible potential of healing diseased retinas.

Why wouldn’t our bodies have the potential to heal themselves in this context? The human body is a miracle. A mundane miracle, but a miracle all the same.

http://www.schepens.harvard.edu/press_releases/march_24_2008.html

Fetal RPE Transplantation

2008-05-22T19:37:00.000-07:00

Dr. Norman Radtke is doing RPE transplantation again. When I researched this procedure three years ago, he and his team were transplanting one sheet of fetal retinal pigment epithelial cells (RPE) in to the diseased retinas of people with RP and ARMD. He is now doing transplants with two sheets of cells, both neural and RPE cells. He has some recent case study data on his site.

If you go to the “clinical trials” section of this informative website, you will find information on the trial. He also has a section entitled “outside trials” as well as “trial bulletins”. Both are excellent resources for keeping up with the latest in retinal research, regardless of who is funding it. The “bulletins” section is one I find particularly notable.

http://www.rvrc.com/_drradtke.cfm

I did find some published work by Dr. Radtke on this procedure.

This article was published in 2004, and reflects the results when transplanting one sheet of fetal RPE cells.

http://www.ncbi.nlm.nih.gov/pubmed/15302656?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Information from 2002:

http://www.ncbi.nlm.nih.gov/pubmed/11931789?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

From 1999:

http://lib.bioinfo.pl/meid:112531

A Swedish rabbit study on "full thickness implant", which I believe may be both the RPE and neural retina layers.

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ArtikelNr=27472&Ausgabe=226339&ProduktNr=224269

Swedish pigs:

http://www.ncbi.nlm.nih.gov/pubmed/17072635?ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
An 2002 overview of retinal transplantation:

http://www.djo.harvard.edu/site.php?url=/physicians/oa/379

I keep an eye on Steve Wynn, Las Vegas casino developer and gazillionaire, since he has RP and is one of the wealthiest people on the planet. In the blogosphere, there are numerous references to a "government approved experimental eye surgery" he had done in May of 2007 at Johns Hopkins. So, I tried to find any trials at Wilmer (Johns Hopkins) that are recruiting RP patients to see if I could make an educated guess as to which procedure he had done. I did not have much success. But, I will keep searching. According to the articles in the blogosphere (always suspect), he disclosed this surgery plan to his dealers on the eve of a union vote. They still unionized, but the information was made public. If you believe what you read, anyway.

Obviously, there are numerous ethical concerns when using fetal retinal tissue from aborted babies. Someone, I believe it may have been Mark Twain, stated something along the lines of, "Ethics are the luxury of the well fed." In other words, it is easy to extol lofty ideals and virtue when in a position of relative ease. The real test comes when "the rubber hits the road" and life becomes more challenging.

My personal opinion is, until you have navigated a busy intersection with a toilet paper roll encircling each eye and a stick, then you do not get an opinion. Okay, maybe you can have one. But, do not express it. At least, not around me, unless you come bearing dark chocolate and red wine. :)

Gene Therapy and RP

2008-05-19T12:54:00.000-07:00

This is old news at this point, but I just have not found the time to write about it. Below is the article published in the New England Journal of Medicine regarding the recent gene therapy trial for LCA, a severe, early-onset form of RP.

http://content.nejm.org/cgi/content/full/NEJMoa0802268

There have been press releases issued to major news outlets. You can see the media coverage at the FFB website:

http://www.blindness.org/

It is worth the time to read the academic article. While it is difficult for a layman to understand all of the jargon, it gives a realistic picture of the actual results achieved.

Yes, it is very exciting. But, it is the result of, at least in the study published above, one person's improvement in one aspect of vision, contrast sensitivity. Apparently there is the study above as well as another one using a different set of three adults. This is the only published peer reviewed article I have been able to locate in PubMed (thanks for the share, G.). And, as all of the scientific types are quick to remind us RPers, one person's experience does not usually mean much and we should not invest too much time in being hopeful. Unless it is gene therapy, apparently.

I suppose I must be missing something. It certainly would not be the first time. Maybe the other study, which I cannot locate, had better results.

This is the first gene therapy trial, to my knowledge, done for a condition which is not fatal. I have to admit, I am floored the FDA approved gene therapy for a non-lethal condition. The exciting thing about this trial, based on the little I know about gene therapy, is no one had "adverse events", like dying, from the viral vector used.

A vector is a virus used to carry the normal copy of the gene to the target gene. The tricky part is using a virus that is not harmful to humans. In other (non RP related) gene therapy trials in the past, people have died from immune reactions resulting from the virus. This may be worth the risk to someone dying of a fatal condition. There is also the risk of the replacement gene not just going to the target area and inserting itself in other cells, leading to cancers.

However, by some miracle, these scientists actually were able to get this trial approved in this country for a disease that is not killing people. So, in the scientific community, that must make them rock stars. I am not talking some bubble gum boy band either. More like Keith Richards, able to defy the odds and astonish medical professionals time and time again.

Aging rock star jokes aside, It seems like there are multiple standards at work. Again, I am sure I am missing something. But, take our UCL acetazolamide case study. That is a case of one person having improvements in contrast vision. However, there were no press releases, no buzz or continued funding. Granted, her gains were not nearly as dramatic as the gains of the subject in this study.

But, the results obtained by one young person in the study are very encouraging to me. The increases in his ability to detect contrast are undeniable and unlikely to be explained away. The fact that the dogs who have received the same procedure, eight years ago, have maintained their gains is even more encouraging. And, this is gene therapy's first barbecue for RP in humans. This was just to test safety, and that anyone had any benefit at the most conservative dosing level is encouraging.

My personal belief is gene therapy may be able to help me one day maintain the results of a stem cell procedure. I think it holds an enormous amount of potential for young people who are newly diagnosed and identified. Hopefully the incredibly brave young people who participated in this study will have more improvement and stable general health.

The "subjects" are courageous, pioneering and inspiring. With all of the things I have tried, gene therapy would still terrify me, regardless of who was doing it. Kudos to the researchers as well. Firstly, for getting results. Secondly, for managing to get a trial with this amount of inherent risk done in this country. It has no doubt been a long, laborious road and I look forward to more good news.

Yet Another Glaucoma Drug and RP

2008-04-20T22:12:00.000-07:00

Below is some information on yet another glaucoma drug that has some result in RP. Keep in mind the drug in this study was delivered topically. So, in actuality, it is a relatively small amount of medication that actually makes it to the target area.

If you check out http://www.clinicaltrials.gov/ and enter "retinitis pigmentosa", look for the clinical trial for the "Brimonidine Tartrate Implant". Brimonidine is a glaucoma drug. You will see the drug manufacturer, Allergan, has invested the research and development dollars to create a retinal drug delivery system in the form of an implant. The drug of choice has traditionally been used for glaucoma.This study is going to take place in Europe.

I find this of particular interest given the acetazolamide (another glaucoma drug) case study from the University of London. No one has ever accurately replicated that woman's experience in the form of a larger scale pilot study. In the one attempt, the dosing was incorrect and the study was prematurely terminated.

Now, another glaucoma drug is emerging and a company has invested major funds in an implant in order to deliver it directly to the retinas of RPers.

Interesting....

Below is a link to a pilot study done in Israel. Its results will not enthrall, but keep in mind this is eye drops, not even a systemic delivery in the form of an oral pill.

http://www.liebertonline.com/doi/abs/10.1089/jop.2007.0022

Interview with David Paterson

2008-03-31T18:23:00.000-07:00

I found David Paterson, the first legally blind governor of New York, to have an interesting perspective. I can relate to him in living in a world that is between the sighted and non sighted worlds and how very difficult it is for people to grasp partial sightedness.

first legally blind governor in U.S. historyDavid Paterson to become new New York governorBy Reuters / March 12, 2008NEW YORK (Reuters) - New York Lieutenant Governor David Paterson was setto become the state's first black governor and the first legally blindgovernorin U.S. history, after the resignation of Gov. Eliot Spitzer Wednesday.Paterson, 53, became New York's first African-American lieutenantgovernor in November 2006. He has been legally blind since childhood,with only partialsight in his right eye.Spitzer resigned after media reports linked him to a prostitution ring.He said Paterson would take over Monday.The following are some facts about Paterson:Paterson was born in Brooklyn to Portia and Basil Paterson. His fatherwas the first non-white secretary of state of New York and the firstAfrican-Americanvice chair of the national Democratic Party.He earned his bachelor's degree in history from Columbia University,graduating in 1977, and completed his law degree at Hofstra Law Schoolin 1982.Paterson became a public servant in 1985 when he began representingHarlem in the New York State Senate, according to the New Yorkgovernor's Web site.In 2002, he became the body's minority leader, the first non-whitelegislative leader in New York state history.In 2004, he became the first legally blind person to address theDemocratic National Convention.In 2006, Paterson was elected New York's first African-Americanlieutenant governor.Paterson ran the New York City marathon in 1999.Paterson, an adjunct professor at Columbia's School for Internationaland Public Affairs, lives in Harlem with his wife, Michelle PaigePaterson, and theirtwo children.Additional information from a New York Times article FROM January, 08"As a disabled person, there's certain times that I don't want to appeartoneed that much help. When I was in college, when I was at Columbia, Ihad aprofessor - I actually Googled him, he passed away in 1986 and his namewasBasil Ruch, and he was a professor of history at Barnard College, and heshowedme a picture of Franklin Delano Roosevelt being carried into the 1932Democraticconvention. And he said that Roosevelt by 1932 was still able to walk acertaindistance, but not quickly, and he wanted to walk in, he wanted thecountry tosee him standing, and but what happened was, when he started to walk,and he gottoward the end, he was starting to be a little jittery, that a bunch ofsupporters, thinking they were helping him, grabbed him and picked himup andcarried him in. And you see in this picture - and I couldn't really seeit, buthe described it to me - he has this stern, angry look, because theymessed uphis moment. And I know what he was feeling. Because sometimes you wantto project a certainamount of strength. And you can project it if you're a woman, you canproject itif you're disabled, you can project it, but often the people who loveyou don'tsee the need for you to project it.I remember when I was in the D.A.'s office, and I conducted a hearingand it hadto do with a stalker who was bothering this woman. And I got to feelingwhen thewoman saw me holding the file up to my face and that kind of thing, andthestalker's looking at her, and she's kind of - I got that she didn'treally knowif I was able to handle this.And I went over to her and I said, "Listen, just in case we lose thishearing,don't worry, because when he goes outside, I'm going to kick his butt."I saidthat to her because I wanted her to know that I'm in charge of her case.Andthat's what I'm saying about projection."Q: Did you always think, with your disability, that you could followyour fatherinto politics, or was that something you came to over time?A: When I was 10 years old I watched Robert Kennedy speak at theDemocraticNational Convention and I wished I was him. And I think, again, therewas thatfamily connection - he was following in the footsteps of John, Hillaryfollowsin the footsteps of Bill, so I always relate to that, you know, kind offamilymember who has to deal with that shadow.When I was in college, though I had academic ability, I don't know thatI wasall that socially developed, or had a real difficult problem askingpeople forassistance, and had a lot of problems as a result of that. And I thinkas I hadmore problems, my ideas about being in politics, or following my fatherdwindled. I didn't see myself as - I think my self-esteem reallysuffered fromthat. ...Q: In terms of your vision, how much can you see?A: I am legally blind in my right eye, and totally blind in my left eye.I'mlooking at Armen [Meyer, a press aide who was in the room]. I know hehas awhite shirt on, I know he has a tie on, but from this distance I can'ttell youwhat color it is. I think it's a darker color. ...When I am in places where I am familiar, I will appear to see betterthan inplaces where I'm not. If I walked around my house, and you didn't know,you'dprobably think I have no vision problems.When I say I saw something, it's more like I sensed it. So when I saidthat wewere on a plane with the Clintons, and we're all eating pizza, I knewthat I waseating pizza and I knew they took pizza off the tray, so I assumethey're eatingit. I think people's perception of me sometimes is that I see more thanIactually do. But I play basketball, and I've done things that peoplewith my vision aren'tsupposed to do. I'm in this interesting sort of zone between the sightedand theunsighted, and have never really met anyone who I visually relate to,I've nevermet anyone who is kind of like me. ...My truest disability has been my ability to overcome my physicaldisability. Soin other words, as soon as people see that I can be independent, thenthey holdme to the standard that everyone else is. So I remember once I told theairlinesthat I had a sight problem, and they put me on this bus to go to a hotelbecausethere were no other flights out of the airport that night, and I gave upmy seatto everyone got on and they passed me, and then like this 90-year-oldwoman, whowas trying to get up the steps, and I couldn't take it anymore so Ihelped herup the steps, gave her my seat and took another seat. First stop, thebus drivertells me to get off. And I know that he's doing this now because hethinks Ihave no problem. He goes, "Go that way." And I almost fell in thewishing wellin front of this hotel. That's because he saw me able to fend formyself.And I think that's been my greatest disability, that as I've overcome myphysical disability, it just leads to other problems. So I think I havenowlearned - and I'm not doing this to be deceptive - but I don't act theway I didwhen I was 17, like I can do everything myself, because I realized theminute Ido that, no one helps me. So I learned to be a little more pragmaticabout life

RP, supplementation and MS unit

2008-03-25T20:42:00.000-07:00

http://www.altoonamedicalsupply.com/retinits%20pigmetosa.htm

First Legally Blind Governor

2008-03-16T14:48:00.000-07:00

Not only is David Paterson New York's first Black governor, he is NY's first legally blind governor. His blindness was caused by a childhood illness. He has some vision in one eye and no vision in the other. He went to law school AFTER being legally blind.

What is his message to me? Blindness is no excuse to not hold yourself to the highest standard of achievement. Many people, out of ignorance, will coddle us. The "tough love" mentality has to come from within. Hard? Absolutely! Worth it? Well, what is the alternative?

http://www.ny.gov/ltgov/

Rebuttal to my 2/15 Post

2008-03-11T20:41:00.000-07:00

Facts quite often, I fear to confess, like lawyers, put me to sleep at noon. Not theories, however. Theories are invigorating and tonic. Give me an ounce of fact and I will produce you a ton of theory by tea this afternoon. That is, after all, my job. -Ray Bradbury, From the foreward to "Mars and the Mind of Man"

In my post from 2/15, I present two case studies and one larger scale study to make a theoretical case for the use of acetazolamide and RP, independent of CME. I am by no means in a position to advise anyone to take anything. I am simply presenting information I find interesting as well as connections that intrigue me.

An anonymous researcher replied to me via email. I am including his response below. It gives another perspective. He was kind enough to provide his input. If you have the time to read the full text of the University of London acetazolamide case study, you will find that the subject's visual field expanded substantially. The authors maintain this only happened after several months at a dose of 1000 mg. In the larger study the anonymous researcher comments on, the dosing was cut in half and the duration in a third, if memory serves. So, it was not really a valid replication of the case study.

Researchers do not find one case of an RPer making substantial gains in visual field of much interest. I, as a patient, do find it interesting. I also believe, when blindness is the alternative, RPers should have the option of trying experimental therapies with informed consent. RPers should not have to be in a clinical trial to have access to prescription drugs or other readily available therapies that could, possibly, help them. I do not believe we need to be babysat. RPers can understand risk/ benefit analysis and come to their own conclusions, with information on risks and management of those risks. Physicians need to be partners with patients, not gatekeepers.

For argument's sake, say I had some experimental therapies. Even with a positive change in my ERG, I am convinced I could walk in to the university near my house, get an ERG that shows normal vision from my flat line now and no one would raise an eyebrow. They would say, "Hmmm....that is unusual. She must not have had RP. It must have been something else." They would say this even if I presented in-depth information on the protocol I followed, backing it up with published research. My retinal specialist is a proactive guy, maybe he would write up a case study. When people read it they would say, "But she did so many things. How can we even attempt to make a causal connection?"

As RPers interested in actually trying to treat this thing, this is the mentality we face. Do not misunderstand, research is vitally important. But, do not count on these people to make any kind of common sense connections. Until something is effective in very large scale studies, no one cares.

Below is the research scientist's response. It was very kind of him to send this information. I appreciate his involvement and interest.

I read portions of the Friday, February 15 blog entry . In your point #2 you say, "There have been studies that have shown acetazolamide improves visual function in those who have RP but no CME." ... but the study that you cited does not say that at all. I think you have misunderstood the results. The authors, two of whom I know personally, merely reported the results that three patients showed improvement in their visual field -- an improvement that was not reproduced in the crossover study. In quantifying these visual field changes, they used the word "significant" which in conversational English almost always means "huge", but in research it means “unlikely to be explained by chance” (more on that later). But no matter how you define the term, these "significant improvements" in three patients would never cause a medical researcher to as much as raise an eyebrow or utter the sound “hmmmm” -- for a variety of reasons. Pilot studies by definition lack the statistical power of the gold standard placebo-controlled, double-blind large study, and therefore the goal of the pilot study can never be more ambitious than to suggest a interesting trend that might be worthy of further investigation (and the health risks and enormous expense of further investigation). It is a mistake of the highest order to suggest that the results of this pilot study demonstrate causation as your statement implies. Again, by definition, no one in the research community would ever interpret the results of any pilot study as causing anything. And especially since, as in this case, the numerically small positive observations were:
a) derived from subjective psychophysical rather than objective electrophysiologic measurements.
b) not reproduced in the crossover study Regarding A: An automated threshold-related 60° visual field is a brutally boring and stressful test (as I'm sure you probably know). Improvement or decline in performance after repeated trials can easily be attributed to "the learning effect" or fatigue respectively. In our glaucoma practice (where visual fields were, until recently, widely used), significance is usually reserved for changes observed in comparison to an average of three baseline measurements -- and even then, it is regarded with suspicion if the patient has false positive responses (suggesting anxiety or eagerness) and/or false negative responses (suggesting boredom, fatigue, Munchausen syndrome or malingering ). This "catch trial invalidation" can be factored out if the visual field is performed manually (Goldmann perimetry) by the same skilled perimetrist on each successive patient-visit. But these kind of visual fields are rarely done nowadays because it is slow, personnel-intensive and therefore quite expensive in terms of resources. For these reasons the visual field is seldom (or should I go out on a limb and say never) taken by itself to make patient management decisions. There are just too many opportunities to be wrong in any single interpretation. But fortunately, in glaucoma management at least, new, more sensitive and more objective technologies have emerged that will make the visual field a medical anachronism in the next few years. However, patients will still get serial visual fields as long as the test is still being paid for by the insurance companies, in spite of the fact that glaucoma docs rely upon them less and less.Regarding B:I just flipped a coin 13 times and got ThhTThhhThhhT = 8 Heads + 5 Tails. There are also two runs of three heads in a row. What should I make of this apparent bias towards heads? If I didn't tell you that I was flipping a coin, but instead I just simply showed you some results where there were 8 positive outcomes and 5 ambiguous or negative outcomes, you might be justified in thinking that "something is going on here" that is worthy of further investigation.After 13 more flips I get: TTThhhhThhhhT = a repeat of 8 positive outcomes + 5 negative or ambiguous outcomes! Even more exciting is the fact that in this series there are two runs of four heads in a row! We could be seduced into thinking that we are definitely on to something in our little "pilot study."Now I'm going to put my 13 pennies in a shot glass, shake it up and then dump it on the table. I get: 5 positive outcomes + 8 negative or ambiguous outcomes. Repeating the shot last method yields: 6 positive outcomes + 7 negative or ambiguous outcomes. If I repeat these trials enough times, regardless of the method, I will eventually, according to statistical theory, achieve the results predicted by the known mathematical probability, which is of course 0.5 -- or 6.5 Heads + 6.5 Tails. But if we do not know the probability of any event occurring, which of course is the case in every study (otherwise it would not be a study), then much larger numbers are needed to detect a "significant" event and then to announce that such an event was statistically unlikely to have occurred as a result of chance alone.So in summary, the three solitary "positive" findings would be more interesting if they were objective measurements (i.e. electrophysiologic) and if they were reproducible. With more concrete objective data, the authors might get funding and FDA approval for an even larger (but still pilot) study -- say, with 20 or 30 people. But because no reproducible, unarguably positive result was found, this paper serves as a warning to other researchers who discover it during their literature review "don't travel down this particular rabbit-hole." The NIH is never going to fund a full blown study using such weak data, and the FDA would object to a large study for similar reasons -- authorizing the "off label" use of a drug that can produce significant side effects on the basis of a one-time observation of 3 visual field improvements -- which could not be reproduced even within the same pilot study. The in-vitro studies that you cited offer a biochemical mechanism of action which no doubt fueled, and might continue to fuel, occasional research interest. But the lack of hard evidence means that medical research is a long long long long way away from suggesting any of the carbonic anhydrase inhibitors as a treatment for RP, and any physician who prescribes it to a patient who does not have a proven case of glaucoma is taking a huge medical-legal risk. The statement at the bottom of one of the papers you cited "These experiments suggest a promising approach to treatment of RP17 that might delay the onset or possibly prevent this autosomal dominant form of RP"... is pretty standard "research speak" for .... "I want my paper to be cited in more treatment-related journals." It is the, "how is this research relevant" statement that nearly every research paper optimistically and triumphantly makes in closing, and it should not be taken as if a new cure has been discovered. However, the presumed strategy of getting it cited in journals other than biochemical abstracts didn't work, as to date it has been cited only by four other papers -- all of them biochemical works, and none of those were follow-up studies pertaining to RP.You probably regard the response you're getting from U.S. doctors as somewhat gutless, uncaring and maybe even inhumane. But demonstrating a promising in-vitro mechanism is light years away from prescribing it as a therapy -- at least in the United States. A colleague sent me an e-mail suggesting that I watch 60 minutes tonight for a segment on FDA surveillance gone wrong. I got busy and missed it. Did you watch it? I'll try to find the video or transcript online later but the very existence of such a story supports the "damned if you do and damned if you don't" criticism that no doubt influences the FDA's usual abundance of caution when it comes to authorizing new treatments.

Yet another hyperbarics case study

2008-02-24T19:07:00.000-08:00

Yet another hyperbarics case study showing an increase in visual field. I think the patient in the German case study is going to have the best long term result because he continues to go five times per month after the initial intensive treatment phase.

http://www.ncbi.nlm.nih.gov/sites/entrez

I really would have appreciated knowing about this ten years ago. It is interesting how the minds of researchers work. Nothing is of particular interest unless it is large scale, uses the most objective testing method was conducted during a full moon and so on and so forth...Well, I added the last one, but you get my drift. .It is even more noteworthy how s-l-o-w the process is to move a treatment from the lab to clinical practice.

I feel it is up to me to fend for myself. I am blessed to be able to do so. I think patients are entitled to any information which may prove remotely promising. Particularly something like hyperbarics that is relatively low risk and currently available. People should be able to weigh the risks and proceed or not, their choice. But, if there is a treatment that has helped and is not widely available or known about because no one has bothered to fund a large scale trial....and patients are not aware it is out there....well, that is just not acceptable.

Alternative Explanation-Diamox

2008-02-15T18:05:00.000-08:00

Below is a link to a research article from South Africa. To put it in context, I will give a little background on acetazolamide (Diamox) and RP....

1) Your RS will view this from a "majority of the evidence" perspective. This is the difference between being a doctor and a patient. S/he will tell you acetazolamide was used to treat CME associated with RP. They will tell you this is the reason why visual acuity improves in those with RP and CME who use Diamox (generic name acetazolamide).

2) There have been studies that have shown acetazolamide improves visual function in those who have RP but no CME. See the following link for more info:

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=8425835&dopt=AbstractPlus

Okay, so what gives? If the standard line of thinking among the RS community is correct, and acetazolamide only works because it helps the CME (and is replaced by other drugs now) , then WHY is it helping people with RP who do not even have CME?

That means either:

a) The researchers who reported the visual measures improved in people with RP and no CME while on acetazolamide were not telling the truth OR

b) The "significant peripheral field gains" in 3 out of 13 no CME/ RP patients was due to some testing flaw not experienced by the controls OR

c) Our three out of thirteen visual field testing rock stars were all just having a bang up day OR

d) There is another factor influencing the improvement in visual field gains in the RP no CME folks.

So since I come from the "weigh the risks and give it a whirl" versus a "preponderance of the evidence" school of thought, I decided to keep digging. The link below offers an alternative explanation for the effectiveness of acetazolamide in treating RP.

http://www.ncbi.nlm.nih.gov/pubmed/15295099?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

A possible explanation from a genetic perspective:

http://www.ncbi.nlm.nih.gov/pubmed/17652713?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

The authors of this case study also make a case for an alternative explanation and increased potential of this drug in RP:

ARTICLES AND REPORTSLong-term effect of acetazolamide in a patient with retinitis pigmentosaJC Chen, FW Fitzke and AC Bird Department of Clinical Ophthalmology, University of London, England.The authors studied the therapeutic effect of acetazolamide on a patient with autosomal dominant retinitis pigmentosa complicated by retinal edema. In addition to reduction of macular edema and some improvement of central vision, they found an unexpected progressive increase in extrafoveal retinal sensitivity with prolonged medication. It is proposed that the therapeutic effect is mediated by alteration of retinal pigment epithelial function and that disturbed polarity is restored to a more normal state. 12

So what if our "preponderance of the evidence" thinkers are wrong? What if the British case study explanation above can be further supported by the technical details in the South African article? WHAT IF THEY ARE RIGHT? And I am sitting here not at least trying a drug available on every corner within a five mile radius of my house? The acetazolamide, not the other one commonly used for glaucoma by old ladies in garden clubs. :)

I guess this drug is very difficult to take. Well, I know people with glaucoma who have been on it for decades and are happy to have vision. Everyone's body is different. There is no way to know how it will affect a person until they try it. It is not like it is an opiate.

The problem is there is no creativity in medicine because everyone gets sued. A lot. Sigh....

Japanese Hyperbarics Abstract

2008-02-09T18:04:00.000-08:00

I have linked to quite a few hyperbaric studies. After reading through the research, I have come to my own conclusion. It seems as if hyperbarics must be continued in order to maintain the same level of visual improvements it provides. However, it does not seem to need to be at the same intensity.

The German case study seems to be the most easy to replicate. The patients in the Italian study went every day for two years. This would not be practical for most people. However, the German case study in which the patient started with an intense schedule for four months, tapering off to five treatments per month thereafter, seems more practical. He is maintaining his improvements.

So, it is my belief that in order to keep the gains one must continue HBOT to some degree. It is encouraging to know the patient in the case study is able to maintain his visual gains by going five consecutive times per month.

It is important to use a "hard chamber" with hospital grade oxygen. It is also critical to note how many atmospheres of oxygen are being used and for how long.

Mechanism of action? Hmm...Well, the simple answer would be that it saturates the blood with oxygen thus providing more nourishment to the ailing retinal cells. However, hyperbarics constricts vessels. So, either the hyperoxygenation of the blood is so beneficial that it more than compensates for the constricted vasculature OR there are additional/ other factors at play.

One of the articles I link to discusses how exposure to hyperbarics increases the number or circulating stem cells in situ. Our body has its own stem cells which cruise around and do their work. One of the articles discusses how exposure to hyperbarics increases the number of these stem cells significantly. So, this also could be a factor in its effects as well as the fact that, even ten years later if you believe the Italian study, the hyperbaric group maintained more vision than the controls.

There is also a nitric oxide component which is interesting. I know, I need a new hobby. Wine tasting is the only one on the radar and it seems like a slippery slope in to overindulgence! I mean, whomever decided that a red wine glass should be the size of a small globe?! :)

More RP Stem Cell Research- India

2008-02-08T15:44:00.001-08:00

http://www.sciam.com/article.cfm?id=stem-cell-eye-repair

Hyperbarics Protocol

2008-02-01T21:41:00.000-08:00

Below is some information on a relatively practical HBO therapy protocol.

http://archive.rubicon-foundation.org/1635

Interview with Attorney

2008-01-22T14:25:00.000-08:00

The link below is an interview with an attorney who has Usher's. It helps me to read it when I am experiencing my own personal pity party.

http://query.nytimes.com/gst/fullpage.html?res=9E01E7DB153FF931A15751C0A96E958260&sec=&spon=&pagewanted=all

Another inspirational attorney...It is not an oxymoron! :)

http://www.abanet.org/disability/spotlight/jan08.shtml

Could not Resist

2008-01-14T14:20:00.000-08:00

Okay, turn your speakers up and enjoy! Try not to get so disoriented that you vomit. :)

http://www.youtube.com/watch?v=Z4osbcmbSkc

FFB Advises Antioxidant Combination

2008-01-06T14:22:00.000-08:00

Okay, vitamins are nothing new. But, empirical data showing that, only in combination, they slow retinal disease and an accompanying formula which is currently available? That is news. I heard the Foundation Fighting Blindness recommended the use of "New Focus" at their L.A. conference. They cite studies in England which support its use. I did some surfing and found one in PubMed from Sweden.

Many have maintained the reason supplementation has been difficult to study under the current scientific framework is because supplements generally work in a synergistic manner, not an isolated one. A "one variable at a time" scientific structure makes it hard to prove nutritional supplementation. It is good to see researchers testing them in combination as well as isolation.

I know nothing about the company below. I have no commercial interest in them. But, this is the formula recommended by the FFB. Before you roll your eyes thinking, "another airy fairy thing that is supposed to work and does not", read the data. Also note this formula was made to replicate the proportions of the elements included in the study.

http://www.goodhealthusa.com/pd_pure.cfm

Data from the Swedish study. The FFB mentioned English studies as well, if you are motivated to do more research and find them.

http://www.ncbi.nlm.nih.gov/pubmed/17293057?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Gene Therapy

2008-01-02T14:07:00.000-08:00

Some scoop on the LCA trials. One of the commenters on the blog below had a gene therapy procedure for LCA currently in clinical trials. LCA is a genetic retinal degenerative disease. Once there is one successful gene therapy trial, then it will be extended to different types of rd disease for which there are identified genes. Verdict is still out. If you want to get a genetic test and be added to a registry, contact the Carver Lab at the University of Iowa.

http://lcablog.blogspot.com/2007/11/one-more-lca-trial-for-rpe65.html

Most Recent Hyperbarics Study

2007-12-30T12:10:00.000-08:00

Below is the most recent hyperbarics study. It is unique in that it documents the long term effects of undergoing hyperbarics and its effects on RP.

http://www.ncbi.nlm.nih.gov/pubmed/17674017?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Cyclosporine and RP

2007-12-27T16:08:00.000-08:00

I was emailing a Hungarian RPer today. Anyway, I remembered reading about a research study using cyclosporine for RP being conducted at Semmelweis, which is in Hungary. I relayed the info and then was bit by my terminal case of "curiosity killed the cat".

So, I started googling cyclosporine, retinal degeneration and did a patent search. Looks like Dr. Gholam Peyman, LASIKS patent holder, former professor and all around ophthalmology super star, holds a patent on using cyclosporine delivered via IOC for RP.

IOC is lingo for "needle in the eye". I can see why they use the term "IOC". Can you imagine sitting down with your RS and hearing, "We will be delivering this medication via our cutting edge 'needle in the eye' technique." And for the record, a needle in the eye does hurt.

The Hungarian study uses drops instead of IOC. There is some resistance to the idea that a drop can make it to the retina. Anyway, something interesting for the hobbyist. None of the journals offer that box to check on your subscription form. :) Guess I cannot make fun of my husband for playing video games with a hobby like "reading medical journals when I do not have to...."

http://www.patentstorm.us/patents/7083802-claims.html

My Vision Now

2007-12-26T19:32:00.000-08:00

My vision nine months post placental implant shows very little change since before the implant. In fact, the visual acuity in my left eye, per the Snellen test, is a line worse. This is not considered "significant" in clinical land. It could have been a bad day. It could have been a good one.

As for subjective improvements? Things have remained very "dirty tunnel" and in major need of some heavy duty cleaning! It was pretty amazing being out of the tunnel for a short time last summer. And the night vision thing?! I felt like a super hero! Of course, my husband was quick to tell me that having normal night vision is a pretty lame super power.

Does this depress me? Well, if I did not believe this was part of a plan for my life, the answer would be "Ummm......of course!" But, I do believe in a Creator and a plan. So, I find it more frustrating than depressing. Annoying...Extremely annoying! That is human nature, I guess. I could focus on being grateful for the vision I DO have as opposed to focusing on what is lacking...Gosh, the horrid puns just keep coming. Guess I need to pray on it.....the gratitude part, not the puns. Or possibly the puns too....:)

Dorzolamide- RP and CME

2007-12-26T19:23:00.000-08:00

Another drug possibility for RP and CME:

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17215269&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Check out the FFB's website for the latest on nutritional interventions beyond Vitamin A Palmitate. I also found the information about the Harvard study showing that eating processed baked goods speeds the progression of AMD interesting. The late Grace Halloran, RPer. author of Amazing Grace and creator of her own vision care program, made these assertions over a decade ago. I wish I had been more consistent in following her protocol. She was decades ahead of her time. Live and learn...

More on an RD disease responding to glaucoma drug

2007-12-21T18:21:00.000-08:00

From the FFB's website:

http://www.blindness.org/research.asp?id=287

Another acetazolamide study- RP no CME

2007-12-14T17:47:00.000-08:00

The authors of this study maintain the improvement seen in their subjects was independent of the resolution of CME in RP. This jives with what the authors of the case study hypothesized in their conclusion. In other words, the improvement in visual function is not just due to controlling the cystoid macular edema, rather there is a possible metabolic change or other explanation.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=8319913&ordinalpos=14&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Possible Explanation for Acetazolamide Effect

2007-12-14T16:52:00.001-08:00

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15295099&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

10 Year RP Hyperbaric Study

2007-12-13T19:56:00.001-08:00

Below is a link to a study which followed people with RP for ten years who underwent hyperbaric therapy. Their conclusions are encouraging. It may provide a means of stabilizing vision loss. Now, the financial and practical realities are another issue.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17674017&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

FDA-Approved Trials Recruiting

2007-12-13T18:14:00.000-08:00

An email from a physician reminded me of the importance of emphasizing mulitple opportunities. Most of the FDA-approved trials cost next to nothing. Some will even reimburse patients for time and travel.

http://clinicaltrials.gov/ct2/results?term=retinitis+pigmentosa

Hyperbarics Mobilizes Stem Cells

2007-12-13T15:16:00.001-08:00

Attached is an article about hyperbarics and the mobilization of adult bone marrow-derived stem cells.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16299259&ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Parents claim Child is Regaining Sight

2007-12-11T19:56:00.001-08:00

Another case of a child with optic nerve hypoplasia whose parents claim he is regaining sight. His website mentions his famiy is raising funds for a year's worth of hyperbaric therapy following treatment. He has been advised to seek hyperbaric therapy five days a week for a year.

http://www.sun-herald.com/Newsstory.cfm?pubdate=092507&story=tp6ch11.htm&folder=NewsArchive2

http://www.cameronsmiracleofsight.com/web/do/site/home?ID=248540

More Rats Regaining Vision

2007-12-11T12:42:00.001-08:00

http://news.bbc.co.uk/2/hi/health/6120664.stm

More on Mexican Stem Cell Clinics

2007-12-10T11:49:00.000-08:00

An emailer sent me some information about a stem cell clinic run by Dr. Ramirez del Rio in Tijuana, Mexico. From what I have been able to gather, both Dr. Ramirez and Dr. Morales are associated with the Steenblock Institute in California. I found two newspaper articles regarding this clinic as well. The reporters did a good job of representing multiple perspectives on off shore stem cell clinics in addition to sharing the testimonial of a family whose son with CP gained sight. Once again, these doctors, like the ones in the article about the Chinese clinic, claim to be using stem cells derived from umbilical cords. Of course, the Chinese claimed to use approximately 40 million cells in treating the child with optic nerve hypoplasia. From what I have read regarding the doctors associated with Steenblock, each injection is approximately 3 million cells.

This is interesting in light of US mainstream research done in rats which shows the superiority of umbilical cord stem cells in RP. Keep in mind the manner in which the cells are isolated and processed is critical as is the delivery.

As mentioned previously, Dr. Ramirez is associated with the Steenblock Research Institute. I scoured PubMed for papers published by this institute and found one. I found another co-authored by Dr. Morales. However, niether was from a peer-reviewed journal. I have noticed the doctors have decided to sell a book with their results. The problem is their results have not withstood a critical review.

Of course, there is a definite "in club" in academia, not so different from junior high. Like junior high, it helps to have a pedigree and money.

So, for argument's sake, what if you do happen upon something revolutionary and are not in the "in club"? In fact, if you are doing revolutionary work in humans, you are pretty much a pariah. What do you do?

It would be nice if the clinic had cooperated with the reporter's offer to test the cells. It would be nice if they had evidence of trying to work with the FDA, regardless of how difficult that may be for a group of outsiders. However, I also have to disagree with the comment made by one academic that a truly efficacious treatment will receive speedy approval by the FDA. That is simply just not true of a non-pharmaceutical therapy. Maybe that statement could apply to an off-label use of an existing drug.

I also disagree with the argument that if these treatments are legitimate then drug companies would be interested. Where is the profit potential for a pharmaceutical company in stem cells which are created by nature? There has to be something to manipulate and patent. In fact, if I were an influential player in a pharmaceutical company, I would be threatened by stem cell therapies. I would want to stall progress as long as possible in order to preserve my future market share for drug therapies, which requires gazilions in R and D funding. Maybe I would even actively support political factions which fuel ignorance by lumping adult, placental and umbilical cord stem cell research in with fetuses and embryos. Maybe I would do these things if the sole measure of my success as a human being was based on next quarter's EPS.

There is profit potential for the labs that process the cells as well as storage facilities. However, an IV can be placed by a nurse. If it does not involve complicated surgery, justifying over a decade of education, where is the incentive?

Jim Rogers, one of my favorite authors and a brilliant financier, asserts that in order to understand the vast majority of human history one must "follow the money trail." Systems and institutions have a vested interest in perpetuating themselves. People promote those who think like them. Therefore, change in establishments occurs very slowly.

So, what do I do as a patient who has a degenerative conditon and would like to enhance her quality of life? Pray....

http://www.signonsandiego.com/news/health/20050613-9999-1n13stems.html

http://www.cerebral-palsy-web.org/news/news-0023.htm

http://www.ramirezdelrio.com/

http://www.stemcelltherapies.org/

http://www.palmbeachpost.com/health/content/local_news/epaper/2005/06/19/m1a_stemcell_0619.html

Child Sees for the First Time

2007-12-04T19:26:00.000-08:00

An email friend sent an interesting article which referenced this child. Attached is information about a little girl who was diagnosed by numerous ophthalmologists with optic nerve hypoplasia. She experienced sight for the first time after traveling to China for a stem cell transplant. The source of the cells? Umbilical cords...

http://www.stillwater-newspress.com/science/cnhinsscience_story_247171700.html

I also received some information about a stem cell clinic in Buenos Aires which provides stem cells derived from one's own bone marrow. The reader told me of a friend with vision-related complications from MS who experienced noticeable gains, both visual and physical, which remained a year after receiving the cells.

http://www.fundacionfernandezvina.org/noticias_mostrar.php?accion=vercompleto&id=15

Also, I learned the procedure performed by Dr. Gonzalez has changed since I received the implant. More placental tissue is being implanted in more areas of the body. I do not have any further information than what is available on Dr. Sapse's website.
s

Glaucoma Drugs

2007-12-01T12:52:00.000-08:00

I can be dense, but I have learned a few lessons in this life. One is the saying, "Where there is smoke, there is fire" is generally true.

The acetazolamide case study discusses a drug which was effective in RP with CME and traditionally used to treat glaucoma. I remembered the drug Dr. Nolan is using to treat retinal disease is also one which was used in the past to treat glaucoma.

I was curious to see if acetazolamide and the echothiophate, used by Dr. Nolan, were in the same category. I have read the drops used by Dr. Nolan are no longer manufactured. It would be beneficial if there was another drug which worked equally as well that is available.

Below is a link to an article on drugs used for glaucoma.

http://www.eyesurgeryeducation.com/Glaucoma_prescribed.html

The acetazolamide case study I link to discusses the positive results of a patient with macular edema and RP who used acetazolamide long term. Below is another study which was larger, double blind and focused on people with RP who did not have macular edema.

However, it was limited to eight weeks. The case study highlighted a patient treated for twenty four weeks, The dosing in the double blind study was also limited to 500 mg/ day. The patient in the case study who had impressive gains was taking 1000 mg/day. The results are not nearly as encouraging in the eight week study in which the patients only took 500 mg/ daily. However, for the three people who made "significant peripheral field" gains it does not matter.

I think three out of 13 people experiencing "significant gains in peripheral field" while none of the placebo group experienced gains IS worthy of further investigation, particularly in light of the success of the twenty four week case study.

The shorter term success of the three patients in the eight week double blind brings up some interesting questions: Were they all at a cetain level of degeneration? What other systemic issues did they have in common? Were there any similarities in lifestyle choices? Did they all have the same type of RP? Were they of the same gender? Now that Dr. Stone at the University of Iowa has a genetic testing lab, it would be interesting to see if these three individuals had the same genetic mutation.

The conclusion portion of this article the authors state: Given the results and the reports of side-effects, it is difficult to justify using acetazolamide to improve retinal function in RP patients who show no evidence of cystoid macular edema.

How can you make this conclusion when you did not follow the full protocol established in the case study? How about presenting information to patients along with full disclosure and let us decide? Retinal specialists did that with potentially toxic levels of Vitamin A Palmitate which never showed an increase in anyone's peripheral fields, only a slowing of the disease sometimes.

I also shudder to think the authors of the double blind were actually trying to replicate the excellent work done in the case study. Maybe they were unaware of the case study and did not do a thorough review of research prior to starting their study. Why do I criticize so harshly?

Because practicing physicians only have time to read abstracts, if that. Many people in the research community only read abstracts. We are talking about people's vision, not just lab rats. If the pressure to publish leads you to do less than your best, then go research something else, like the mating habits of the duck-billed platypus. I am sure there is funding for that.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=8425835&dopt=AbstractPlus

More on Hyberbarics and RP

2007-11-30T19:49:00.000-08:00

Below is a link to an article that discusses some research done in various countries on RP and hyperbarics. What I found interesting is that hyperbarics actually constricts the retinal vasculature. However, it is hypothesized that, even with this constriction, the oxygenation is so increased that positive results occur.

Now, I wonder if these people who experienced such dramatic results with the HBOT maintained their results? Also, what if someone combined the use of vasodilating drugs with HBOT therapy? Not only would the retina receive more oxygen rich blood, there would not be a corresponding constriction of the vessels leading to the retina. Or, if there was a correponding constriction, it would be from a dilated versus normal state thus allowing more highly oxygenated blood to the retina. I wonder if vasodilators are ever contraindicated for HBOT therapy?

Now, what if someone provided a stem cell source, preferably via IOC, directly to the eye to a patient on a therapeutic, long term dose of a vasodilating drug. Then, that same patient could maximize the oxygenation of the blood to the retina with the HBOT treatment after receiving the stem cell therapy, using cells derived from the patients own bone marrow to avoid an immune response....hmmm

If the IOC delivery is too intimidating without a gazillion dollars and twenty years, maybe a systemic IV delivery similar to what is being done currently in Argentina with strong documentation in a variety of degenerative conditions.

Just a thought.

http://scuba-doc.com/diveye.htm

Acetazolamide and RP- Case Study

2007-11-30T19:21:00.000-08:00

en, J. C.
Articles by Bird, A. C.
Investigative Ophthalmology & Visual Science, Vol 31, 1914-1918, Copyright © 1990 by Association for Research in Vision and Ophthalmology
ARTICLES AND REPORTS
Long-term effect of acetazolamide in a patient with retinitis pigmentosa
JC Chen, FW Fitzke and AC Bird Department of Clinical Ophthalmology, University of London, England.
The authors studied the therapeutic effect of acetazolamide on a patient with autosomal dominant retinitis pigmentosa complicated by retinal edema. In addition to reduction of macular edema and some improvement of central vision, they found an unexpected progressive increase in extrafoveal retinal sensitivity with prolonged medication. It is proposed that the therapeutic effect is mediated by alteration of retinal pigment epithelial function and that disturbed polarity is restored to a more normal state.
This article has been cited by other articles: (Search Google Scholar for Other Citing Articles)

Regeneration of RPE Cells

2007-11-27T13:47:00.000-08:00

This article discusses RPE (retinal pigment epithelium) and its' ability to regenerate.

http://www.home.earthlink.net/~blindworld2/MEDICAL/6-06-08-01.htm

Debate on ECHO Therapy

2007-11-22T18:40:00.000-08:00

Below is a link to a debate on the Foundation Fighting Blindness' message board regarding Dr. Nolan and his ECHO therapy. I will do more research on this and let you know what I find.

http://www.blindness.org/msgboard/viewMessage.asp?cat=5&msg=24548&start=1

Another Article about Dr. Nolan and ECHO

2007-11-22T10:02:00.001-08:00

This is another article about Dr. Gerard Nolan and ECHO therapy.

http://www.stargardts-au.org/main/HendersonvilleTimes.htm

Article on Stem Cell Procedure

2007-11-20T14:21:00.000-08:00

Attached is an article about a man who had a stem cell operation and regained lost vision. I am assuming he had some sort of corneal operation, not one involving the retina.

Anyway, I think his perspective on blindness is an interesting one. It seems like many of the most well-adjusted blind people I know have been blind since birth or early childhood.

I think his message of not "waiting on a miracle operation" to live life is an excellent one. However, do not be confused. I think it is possible to live a full life as well as fight and try to maintain or regain vision. It is a perspective that emailers bring up to me from time to time, so I thought I would share. I think it will be a great day when blindness is a choice.

http://www.cbsnews.com/stories/2003/09/03/earlyshow/living/main571462.shtml

Overview of Stem Cell Research for Retinal Disease

2007-11-01T17:23:00.000-07:00

Below is a link to a broad overview of promising stem cell research as it relates to retinal disease. It is very readable.

http://www.mdsupport.org/library/7years.html

I think it is interesting that Mr. Roberts points out that these treatments are simply treatments and not a cure. Does anyone actually expect a cure? I think of major chronic diseases such as cancer, diabetes, asthma, arhritis, etc.. Not one has a cure. Many are treatable, but none cured.

Anyway, the article is a quick read. Check it out.

Hope

2007-09-08T12:42:00.000-07:00

I found this quote beautiful and thought I would share.

"Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

Still Alive

2007-08-21T10:53:00.000-07:00

Thanks to those of you who have emailed and called me. I appreciate the care and concern. I am still alive. I just ran out of things to say about eye-related issues.

For now, I am consumed with business and family. But, I am still in the game. I am simply sitting out right now. There will be more to report, just not this season.

Dr. Nolan and ECHO

2007-07-13T19:34:00.000-07:00

I came across this case study and found it interesting. Stargardt's is another retinal degenerative disease. According to their website, this clinic also treats RP.

http://209.85.165.104/search?q=cache:_52o07JXCjQJ:www.mcglamry.net/images/StargardtsCaseStudy.doc+dilute+echothiophate&hl=en&ct=clnk&cd=1&gl=us

Below is a transcript regarding this treatment:

http://www.mdsupport.org/clinic/nolansession.html

Apple iPhone

2007-07-08T11:11:00.000-07:00

I went to the Apple store last night to check out the new iPhone for accessibility. If you have the money and some central vision, you will love this phone/ camera/ email/ internet/ organizer/ nano.....all around rock star of a gadget. Coming from someone who has used a phone so big it looks like it was created by the R and D team at Fisher Price, it was really nice to use something high tech which also has a decent size screen and interface. It is also all touch screen, so you do not have to squint and hunt for keys. So, go check it out or visit the apple store online. I find the interface much easier to use than the one on my iPod.

More Rats

2007-07-07T13:51:00.000-07:00

Okay, this is US research so we are back to rats. But, it is interesting as it seems to suggest controlling the underlying mechanism (s) which causes the degeneration may not be a matter of a separate approach. Things that make you say, "hmm..".

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15372100&ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Indian Adult Stem Cell Research in HUMANS!

2007-07-05T20:21:00.000-07:00

I have been considering the pros and cons of having cells delivered directly to the eye as opposed to systemically implanted. I have received injections in the eye of medications before. So a needle to the eye, while not my idea of a party, is not as awful as it sounds.

The biggest con is no one wants to play with me and injecting oneself in the eye is not exactly a “do it yourself” project. I have yet to see a pamphlet at the Home Depot outlining instructions. Perhaps they will offer a Saturday morning workshop entitled, "Intravitreal Injections for Amateurs", sandwiched between “Faux Painting” and “Drywall for Beginners”.

An anonymous email friend told me about some work being done in India. I found the information below.

http://www.home.earthlink.net/~blindworld2/MEDICAL/6-04-19-01.htm

Progressing to Plan B

2007-06-30T19:34:00.000-07:00

You may be wondering about my newfound obsession with posting research abstracts. Well, I already articulated part of my Plan B, so I will go ahead and share the rest as well as my rationale.

If you are remotely of the school of “one variable at a time” kind of thinking, I recommend you stop reading now because you will want to poke your own eyes out by the end of this post. :)

I am in complete agreement with Dr. Sapse’s theory of the RP disease process as it relates to the type of RP I have. Remember, I believe RP is actually different diseases that appear the same. However, I am not sure about his opinion that GH3 will control the immune response in my case. He abhors steroids.

So, what I am doing now is by no means a reflection of him, Dr. Gonzalez or their advice. Speaking of them, if you are focused on FDA issues, you most likely have some knowledge of research. While I am not going to play the part of pro bono attorney, I welcome any input you have regarding major flaws in studies I link to, issues with certain drugs, etc. Also, any information on stem cell research which is currently recruiting would be helpful to readers, I think.

After experiencing visual improvements after the implant, I want to get them back, obviously. This time I want them to last longer. To that goal, the following plan has taken shape.

This plan includes staving off the immune response, controlling the apoptosis of the existing cells, introduction of stem cells, increasing oxygen to the back of the eye and encouraging ATP production and general nutrition Most of the parts of this are extrapolated from rats, but that is all the information I have at this point

Staving off the Immune Response

I have articulated my belief that my RP is related to an immune response. Smart people have said this long before I was alive. So, it is not really news but is not accepted either.

I feel trying to control the antiretinal antibodies prior to undergoing the next implant may result in improvements lasting longer. I prayed about this and three people in one evening advised me to research anti-rejection drugs. I am considering Delfacort after reading a very small study out of Italy in which people with RP and CME, like me, had some visual benefit after a year on the drug.

The bad news is steroids are highly toxic. Their side effects are nasty and you cannot just decide to get off them abruptly. They suppress the activity of your adrenals. In short, they are powerful drugs.

Steroids can not only make you most unpleasant to be around, but bloated and hairy. Since I am Mediterranean, I have already put my waxer’s children through college with my current salon bill. Hairier is certainly not an attribute I am going for…..Oh yeah, there is also the possibility of osteoporosis. Crunching bones is always fun. Throw in some major weight gain, lots of infections, acne and irritability and you have yourself a good time.

Why would I do this to myself? Well, I have a theory.

I am hoping to suppress the antiretinal antibodies long enough to give the new cells a fighting chance to survive for a longer amount of time. If I can hold off the immune response long enough to give the stem cells the opportunity to do regenerative work, then it will be worth it.

Six months is the goal. Unless my head turns in to a pumpkin and I have a full beard, in which case I will probably not be able to stand it. But, dosing and duration remains to be determined.

Slowing Apoptosis in Existing Cells

Calcium channel blocking drugs have been around for decades. They are used to treat hypertension and cardiac issues as well as a handful of other maladies. They have been studied in Japan for the treatment of eye disease. Once again, they are still studying animals. But, the results are somewhat encouraging.

I was hoping to give calcium channel blockers a try. Unfortunately, the one I have access to was shown to be ineffective in this particular study. I am going to see if I can find more research on these drugs and RP. The nice thing about Navadilpine, one of the calcium channel blocking drugs, is that, according to the information I have found, it does not seem to have the systemic side effects some of the other calcium channel blockers do. It also is being tested all over the world for use in different cognitive disorders because it increases blood flow to the brain.

According to the study from the University of Hirosaki, Nivadilpine was the most effective followed by Nicardipine. The problem with Nicardipine, or Cardene, is it lowers blood pressure and is not as effective as the Nivadilpine. Cardene is another one that is difficult to find, as Dilitiazem, Cardizem, seems to be the widely prescribed one. In the Japanese study it was shown to have no real effect on retinal preservation.

Since I have kept running in to obstacles on this end of the plan, I figured I would put this component on hold and try a naturopathic approach. I am going to continue to look for research on these drugs and retinal disease.

Introduction of Stem Cells

As for introduction of stem cells, that will, hopefully, be via another placental stem cell implant.

Increasing Oxygen to the Back of the Eye

I plan on increasing oxygen to the back of the eye by saturating my blood via hyperbarics (HBOT) for one month post implant. I plan on going three times a week for a total of twelve sessions

Increasing ATP Production

With regards to increasing cellular metabolism and ATP production, I will use my Microstim unit. I have used it off and on with little result. However, there is a lot of encouraging data out there for folks with Macular Degeneration. I think I started using it too late in my disease process, but that is just my opinion. Anyway, different frequencies are known to promote tissue healing in various parts of the body, so why not? I will use the MS unit every day after my implant.

General Nutrition

I will focus on general nutrition and wellness, continue to take highly bioavailable supplements, eat only organic foods, a diet rich in vegetables, specifically greens, continue to eliminate gluten, dairy and minimize sugar. This is not a huge change from what I adhere to currently, but I do need to clean things up some. So, in short, I am going to treat this like training for a marathon and try to get my body in the best shape possible, aside from the pharmaceuticals.

Deflazacort, RP and CME

2007-06-26T21:14:00.000-07:00

If you are like me and have CME (Cystoid Macular Edema) along with RP, you may want to discuss the pros and cons of steroid therapy with your ophthalmologist. My CME does not respond to local treatment. I find the loss of central vision very annoying because it impacts my ability to read easily. As an aside, Deflazacort is also prescribed as an anti-rejection drug.

Enter "Deflazacort and Retinitis Pigmentosa" in the search term box.

http://www.ncbi.nlm.nih.gov/sites/entrez

My Disease Process Theory

2007-06-24T20:45:00.001-07:00

I have a theory of my RP disease process. Notice I say “my” because that is where my theory stops. I think the many types of RP probably have distinct disease processes. They get put in the same category because they present clinically in similar ways. Unless there is a very obvious difference, such as degenerative hearing loss, they are placed in the same category.

I believe one of the types of RP has a systemic autoimmune component. Its differences are more nuanced and the associated conditions have not been linked together as being part of the RP picture. I am by no means an expert. I am just some lady blogging on the internet, that is it. Of course, when the experts can offer you the technological equivalents of the wheel and fire, in the form of a cane or a dog, you learn to fend for yourself relatively quickly.

In my case, I believe there is an RP gene(s) that was triggered. My mom most likely has the same gene, but did not experience a trigger which explains why she only has night blindness and no substantial vision loss. So, this trigger could have been a virus, who knows? At this point, it does not matter. Then, the cells in my retina began the process of apoptosis, a type of cell death. This was followed by my immune system perceiving the clumping cells as a foreign invader. My immune system then started to produce antiretinal antibodies. This started the process of my retina being attacked by my immune system as well as the cell death which was the result of the genetic expression.

Dr. Sapse and Johns Hopkins have both published work on antiretinal antibodies. The hard core scientist will tell you there is no evidence of the antiretinal antibodies causing a problem. Well, I am a betting woman and, at this point, the odds are looking pretty good that these antibodies are not just some harmless byproduct of the disease process. Why not assume they are causing some of the issues? It is possible to manipulate them and see what happens. For me, personally, blindness is a pretty big floor effect. Why not take some risks if an adult is open to them?

When I received the stem cell implant, I believe the cells homed to the damaged subretinal space. I believe they started to do some repair work. Then, the underlying cocktail of apoptosis and autoimmune function kicked in on the new cells and they went the way of the old ones.

So, it will be interesting to see if the navaldipine, which supposedly controls the apoptosis to a degree, will result in a correlating decrease in antiretinal antibodies. If so, I believe the stem cells have a chance of not only warding off degeneration but doing some regenerative work. It is a matter of creating a safe environment.

The next phase may present the need to not only control the apoptosis but the immune system. Maybe once the apoptosis slows, the number of antibodies will decrease. Who knows? It will be interesting to see, nonetheless.

More on Stem Cells and RP

2007-06-23T23:02:00.000-07:00

Interesting research on subretinal injection of different types of stem cells and their result on retinal function:

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17053209&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Rescue of Photoreceptors by Injection of Adult Stem Cells

2007-06-22T06:13:00.000-07:00

I thought this might give my scientifically- minded friends something to check out with their morning Mochas. Give it a couple of seconds and it will download.

http://www.jci.org/cgi/reprint/114/6/765?ck=nck

Putting It Together

2007-06-20T10:45:00.000-07:00

I honestly thought I was through with this for awhile. I was going to work on other projects. But, then again, what do I know?

I am still waiting on the yo yo. I am not very patient, obviously. So, in the case that I do not experience the upswing of the yo yo, I have a multi-pronged Plan B.

1) Calcium Channel Blocking Drugs- If I can get the appropriate dosage to a therapeutic level prior to my next implant, maybe the effects from the stem cells will last.

2) Following the next implant with a month long round of hyperbarics.

I am also going to continue to get labs done and monitor my liver and kidney function. If introducing these two factors does not have the desired effect, I will then move on to addressing the autoimmune components more aggressively. This always seems to be slippery as the drugs can be toxic.

Immune Issues in RP patients

2007-06-20T10:42:00.000-07:00

This article could shed some light on my experience while on Prednisone. It opens the door to understanding the RP disease process as it relates to the immune system.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=3263903&ordinalpos=17&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Hyberbarics and RP

2007-06-20T10:37:00.001-07:00

Below are some links to case studies on the use of hyperbarics and RP. I would be very interested to know if the results achieved were maintained with less or no hyperbaric treatment.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=7940448&ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=10710240&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Calcium Channel Blockers

2007-06-20T10:03:00.000-07:00

I have been thinking and praying on the cellular death aspect, apoptosis, of RP. I know something positive happened with regards to my vision after the implant. The missing key, in my opinion, is how to stop my body from pummeling the new cells in the same manner it does my own photoreceptors.

Then, I remembered reading years ago about a study using calcium channel blockers in France. I believe the drug they tested was dilitiazem, which, if I remember correctly, has shown to be ineffective for RP. But, according to the article below, they were on the right track.

Also, anecdotally, I had a dear elderly friend who had lost his driver's license due to Macular Degeneration. Later, he was put on calcium channel blockers for a heart condition. His vision "spontaneously" improved and he earned his way back up the eye chart and in to the driver's seat.

Then I was talking to a friend who brought up calcium channel blockers. I figured it was worth perusing again. I found the articles below:

This article is not a peer-reviewed scientific one. It discusses the superiority of navaldipine in treating ocular issues over the other calcium channel blockers:

http://www.pslgroup.com/dg/25411e.htm

This article explains part of the mechanism of cell death in retinal degeneration:

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17088543&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

The article below discusses the results of different calcium channel blocking drugs as tested in mice:

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=14706644&ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Shalom, Peace, Namaste

2007-06-14T21:17:00.000-07:00

This will be my last post for awhile. I think giving a visual status on a regular basis would be the blogging equivalent of watching paint dry. I have no reason to think Dr. Sapse does not truly believe I will receive results without further treatment. There would be a clear financial incentive for him to tell me otherwise. For now I have decided to “wait and see”, no horrid pun intended.

However, this could very well be an extremely long term process. And, with something so experimental, how do we measure success? Even if I maintain my vision for years, who’s to say my disease process is not at a point where that would have happened on its own? Short of a dramatic, measurable, sustained improvement in a relatively tight time frame, it is going to be impossible to come to any clear conclusions on the treatment’s efficacy. It is difficult to do that based on one person’s experience anyway.

So, dearest RPers, there are many things to consider when embarking on such a journey. Cost is a big one. Many of us are living on fixed incomes or are underemployed. With regards to this particular protocol, there are inconsistencies. On Dr. Gonzalez’s website it states: "The time for the next implant is determined by the condition of the patient, it is normally between six months to a year." Yet, Dr.Sapse has told me I do not need to return.

Using this protocol for RP is in the earliest stages of its infancy. In short, when you are a pioneer (or you can substitute “crazy person” depending on your perspective) there are no set paths. It is up to you to use the intellect God gave you to come to your own conclusions.

Another consideration is your emotional well being. If you are fragile, have not worked through your RP issues and are expecting a miracle cure, then I recommend staying home. Dr. Gonzalez puts it this way,”This clinic is not responsible for unfounded or unrealistic expectations or claims created by anyone else.”

This is totally unregulated territory. You are putting an enormous amount of trust in people who have virtually no oversight. Be an adult and realize what that entails. Most importantly, get on your knees and pray to God for guidance.

I felt led to go down this path. There is no point to guessing at God’s will. My brain is the size of a pea relative to the galaxies that represent His omniscience. I am very flawed. I always want my interpretation of His will to have a certain end. I have no idea where this will end. I can only hope someone, somewhere, has gleaned something from this experience. I know I have gained so much from sharing it with you.

I personally believe true empathy is the result of adversity. The Bible states:

2 Corinthians 12:9-My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses. (NIV)

It is only through feeling vulnerable that we can identify with those who are “weaker” than us. So, while this disease has been the bane of my existence in many ways, it has also been the best teacher I have ever had.

It is like the teacher in high school whom you perceived as a wicked taskmaster then, years later, you realize this seemingly unreasonable and demanding teacher was the person from whom you learned the most.

Don’t get me wrong, I hate this disease. I hate what it steals from people. I hate what it has taken from me. I hate that people who can do something have not made it more of a priority. Then, I realize the reason I even care about the rest of you is because of it.

I have the email addresses of people who have written me. I will contact you if I have documentation of anything Earth shattering. I have decided I will only blog improvements I can document. I will include my functional improvements and perceptions only when paired with exam data. I will also notify you and publish any abnormal lab tests.

The only thing that would prevent me from contacting you would be computer issues. So, I will commit to updating this blog with objective data regardless of if it is good, bad or indifferent. If you are interested, check back periodically in case I have lost your address.

In the meantime, thank you for sharing in this experience with me. As Dale Carnegie said, “Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all." We may not be in a position to “keep trying” but we can always choose to keep hoping.

Peace, Shalom and Namaste

Night Vision Gains Gone

2007-06-14T06:52:00.000-07:00

The night vision I gained is now gone. It was fun while it lasted, I guess.

Lucy

2007-06-13T11:20:00.000-07:00

A dear friend of mine also has RP. We have known each other for years and met at a different foreign RP clinic. She lives in another state and we talk regularly on the phone. For purposes of this post we will call her “Lucy”.

Lucy had the implant a month after I did. She has had a two line improvement on the Snellen too. Her color vision has improved. She has noticed no difference in her fields or night vision. She is anticipating the “yo yo” and says if she did not test her own vision she may have missed the upturn.

She has not been to the ophthalmologist. Lucy has a Snellen chart at home as well. Like me, she has traveled and tried most modalities, except the Cuban surgery, out there. Our vision loss is also strikingly similar. Our friendship has spared my husband many a countless hour of having to hear about this stuff.

Lucy says she will talk publicly about this experience if she has documented, undeniable results that are stable. Meanwhile we are working on getting her to the ophthalmologist.

If you do not have RP, it can be hard to understand the dread of going to the ophthalmologlst. It just brings back bad memories, is painful, always unpleasant news….plus they never give you a lollipop at our age.

Helen Harris, founder of RP International

2007-06-12T12:04:00.000-07:00

I spoke with Helen Harris yesterday. She is the founder of RP International. Helen is also blind due to RP. She has been working on this longer than I have been alive. I feel very privileged to have talked to her personally. She seems to have a genuine heart for people with this disease that translates in to a passion for fighting it.

I asked her about the information I found. She said there was a procedure done, in 1984 at Louisiana State University, that partially restored an RP patient’s vision. This woman is still alive and has retained her gains.

The RP patient who regained vision is not the same person who had the stem cell transplant and was at the Vision Awards. He received stem cells for a different disease.

Since Helen is a blind woman who has devoted decades of her life to fighting this disease, I have no reason to believe she is not telling me the truth. The possible implications of this are huge. This means the technology is already here. This is both encouraging and infuriating. Because I do not have enough time in my day to lift the amount of weights it would take to work through the anger, I am going to focus on the encouraging aspect of this.

According to Ms. Harris, this work at Louisiana State University was halted. The patient who regained vision was harassed and does not want to talk about it. Her family denies any access to her. Helen was very respectful of her privacy as well as the personal information of the doctors involved. Smart woman.

So, I have no details on the technique or tissue/ cells used. These are interesting times....

RP operation at LSU in 1984

2007-06-11T10:51:00.000-07:00

I found the post below in the blogosphere. I have put a call in to RP International to verify this. I did find a press release regarding the Vision awards. In it, it does discuss the adult stem cell procedure that restored vision. This makes sense in light of the article about the procedure done with a patient's own cells at Moorfields. I will post any new information I receive.

I refuse to believe Americans are so ignorant they cannot discern the ethical difference between using adult stem cells and embryos. Or, maybe it is the result of an orchestrated attempt to polarize people and keep them misinformed. The advantages of living in a global community in the information age are becoming increasingly apparent. I definitely need to pray on this one.

Tuesday, November 07, 2006

Stem Cell Debate Cuts Off Cures For The Blind
Proven cures for blindness using adult stem cells are already available, says an advocate for the blind. But these cures are being held back by politics and the use of stem cells as a wedge issue in election campaigns, she says.Helen Harris, founder and president of RP International in Los Angeles, says that even though the main controversy revolves around ethical use of embryonic stem cells, politics has infected the entire scientific field and has had a chilling effect on adult stem cell applications as well.Acrimonious political campaigns have spread misunderstanding and discouraged funding of all stem cell research in the United States, says Harris. For example, she points to an adult stem cell transplant program at a Louisiana State University hospital that was quietly discontinued in the midst of public political rancor, even though it did not involve embryonic cells and had already led to a successful degenerative blindness cure back in 1984, according to Harris, who had been personally involved with the project.Harris is herself blind, along with two of her sons, from retinitis pigmentosa. She started RP International more than 20 years ago and has raised million of dollars for blindness research, especially involving the Hollywood entertainment industry. Her organization's annual Vision Awards honor celebrities, scientists and other notables for outstanding creativity. The 2006 Vision Awards in Beverly Hills took special note ofadult stem cell research by honoring a patient who was able to regain sight thanks to the LSU technique after more than 20 years of blindness.Harris announced today that her organization will establish a new fund-raising campaign to aid development of adult stem cell treatments for blindness and other disorders."I'd love to discuss with Michael J. Fox and others on all sides of this issue to find common ground and make sure programs like that at LSU get a chance to help millions afflicted by degenerative blindness along with other major disorders," says Harris.
posted by Scott Nance at

Link to the press release on the Vision Awards:

http://www.visionawards.com/pressrelease.cfm?newspressid=22

If this is true, I am going to have to start exercising to "old school" Metallica again. You know, their albums before James Hetfield cut his hair and went to therapy....prior to Lars selling out? I thought I was past that seething anger phase. I suppose God can co-opt most anything for catharsis, even old school Metallica....

Ninja Fighting Star

2007-06-10T19:54:00.000-07:00

I was ranting to my husband about research issues. I had just picked up a copy of the FFB’s latest newsletter. On the front page was an article about some scientists creating photoreceptor cells.

The gist of my rant was I was hoping, a la Occam's razor, these scientists had already tried systemically delivering cells to see if they home and differentiate on their own. For more information on this concept, check out the abstract on the post from May 29th. I expressed to him that I hope they did not just start doing this under the assumption of the impenetrable blood/ brain barrier.

Now, I am very in love with my husband. He is not only funny, bright and kind, he is a fabulous dad. He is the man other women look at wistfully as he plays with our kids in the park. Because I love him, he can also infuriate me like no one else on the planet.

Since he used to run a research lab, he feels the need to defend his ilk from time to time.

This particular evening, as I ranted, I was organizing my very neglected high heel collection. Due to the current state of my vision, I rarely wear them anymore. Due to my height, I look like a crossdresser in them anyway. No insult to crossdressers intended.

He peered over his book and said, “Nat, sometimes you try things in research just to see if they are possible. Not necessarily because you think it is going to produce some end product.”

Dear God, grant me patience, I prayed. At this point I also had my hand on a metallic Jimmy Choo knock- off. My prayer for patience was sidelined by a fantasy in which I was using the stiletto like a Ninja fighting star. In my mind, I was hurling it through the air, after doing multiple revolutions it pegs my beautiful husband squarely between his doe brown eyes.

He read my expression and said, “Well, I am just trying to help you understand where they might be coming from.”

Do I look like the Dalai Lama?

Stable Improvement in Night Vision

2007-06-09T11:10:00.001-07:00

The one aspect of my vision that does not seem to be experiencing the downturn of the "yo yo" to the same degree is my night vision.

It is not the same as it was the night I could see our faces in the picture on the wall. It is better than it was pre-implant.

Mating, Motherhood, Doctors and Research

2007-06-08T04:38:00.000-07:00

I have been really humbled by communicating with people with RP. I feel, at the risk of sounding hokey, honored people have felt safe enough to open up to me about their experiences wtih this disease. For many, it is a lonely path. The relative anonymity of the internet seems to bring out the honesty in us.

There are a number of issues that seem to be a common thread: marriage and mating for men, motherhood for women, the pace of research and the way in which retinal specialists treat RPers.

Men have told me they feel like they will be a "burden" and a source of pity for a woman, so they choose not to date. Firstly, if you truly believe this, you will create this situation. For example, if you think she is just going to feel sorry for you, you will look for examples of that. She may just be nice but you interpret her consideration as belittllng. You blow up and all of a sudden your RP is the issue. She will take your lead. If you make it a huge deal, it will manifest that way. Coming from someone who kissed a lot of frogs prior to finding her prince, if blindness is your biggest personal issue you are ahead of the game. If you have used it to develop your character in any way, you are leading the pack.

Women are reluctant to become mothers because of RP. This can be the result of eugenecist programming, otherwise known as genetic counseling. Or, it may be a personal bias. I suffered from this initially, but then looked around at other people having babies. They were not perfect. In fact, they were all very human. I also thought about all of the qualities that made my mother exceptional. Not one had anything to do with what she could do. Everything that makes my mom a rock star of a mother has to do with who she is.

This leaves us with retinal specialists. Firstly, I believe God has gifted all of us in different ways. We assign value to those gifts due to our flawed human nature. But, in His eyes, they are all to be used to glorify Him and advance His work on Earth.

So, let's talk gifts. Most retinal specialists, and this is a stereotype, are very task-oriented people. They are used to being able to synthesize large amounts of information in order to solve complicated problems. They are some of the brightest people in the medical field. Ophthalmology is a very difficult residency to get in the US and retinal specialists train beyond that. God gifted them with intelligence, obviously. This does not mean He gifted them with social intelligence. The truly bright ones realize this and compensate for it.

Shakespeare said, "To thine own's self be true". I think he meant, know yourself. If you are really horrendous at something, outsource. The truly exceptional retinal specialist is one who can pair his or her expertise with empathy for people. If he or she has no empathy, some people honestly just are not there, they can hire someone who does. This makes everyone happier.

Delivering a tough diagnosis is a HUGE responsibility. If you do it in less than 15 minutes, you definitely need to hire someone who has some therapeutic skills. If you deliver an RP diagnosis without a low vision referral, you need to hire someone. If you deliver an RP diagnosis without covering new research, you need to hire someone. If you deliver an RP diagnosis without personally calling a week later, a month later, several months later.....you guessed it. You also need to have access to a referral network of RP "vets" with some positivism who can serve as mentors to newly diagnosed people. In short, you need to care.

But. you look at us and you cannot see a person, your "vision" is clouded by your clinical background and personality. You see failure. You hate failure. You rarely fail. We render you totally and completely impotent and you are everyone's "go to guy". You just want us to go away. You tell yourself you want to spend your time helping someone you can actually help. Is that really the case? I hope so.

My retinal specialist is an exception to this rule. He has an empathy gene. That is why I go to him. But, like the dating game, I had to endure a bunch of toads.

My personal favorite is the one who told me, at twenty, to go get genetic counseling. Having children was the last thing on my mind at that age. Had he asked me anything about myself, he would have known that.

I think they tell us about genetic counseling because they have a pamphlet and practice standards that say, "refer patient for genetic counseling." Pamphlets give them some paper to hand out. At twenty, I only went to see this guy after my saint of a mother begged me. I was not really in to paying people to terrorize me, so I usually avoided retinal specialists and their tap dance of doom and gloom. Not to mention the torture of the slit lamp exam on photophobic eyes. Even better is the practitioner who turns the slit lamp to its' highest illumination and invites all his buddies in for a glance. Get a better textbook.

Anyway, when I went to see the retinal specialst in my twenties he gave me a little insight. His exact words were, "If people with RP quit reproducing, this disease would go away."

Another RPer wrote me about he and his wife's favorite retinal specialist quote. They were in the office with their children. The kindly doctor said, "Did you know you had RP when you decided to have these kids?"

All sarcasm aside, I am not here to judge people. I will judge actions. Do not comment on anyone else's reproducing unless you are planning on making babies with them. Because you are officially treading on "none of your business" territory.

How about instead of referring us to genetic counseling you challenge yourself to actually find a solution? Maybe that is why God gifted you with that brilliant brain....to innovate.

I have heard stories of RP- related suicides, suicide attempts and serious clinical depressions. So much of RP, in the early stages, is psychological. I just wonder if some of these people had met someone, with RP, living a happy life if they would have decided to take their own life. There is no way to know this, but I am pretty certain the genetic counseling pamphlet did not help.

I know people who were told they were going blind during a two minute phone call. This is inexcusable and should be malpractice.

I am not out to infer retinal specialists are evil. They provide valuable services for many and will, one day, for us. I do think putting very task-oriented people in a situation which requires strong therapeutic skills is a systemic failure. Maybe a "best practices" guideline could give the specialist access to a social worker. Maybe they could work as a team in these situations. I know if I were an interpersonally- challenged brainiac I would be enormously relieved to have some help.

Discussion wtih Dr. Sapse regarding decline

2007-06-07T11:56:00.001-07:00

I have discussed my decline in vision with Dr. Sapse. He disagrees with my theory of the intractable mutant gene triggering a process that will just continue to destroy, kind of like the Pac Man gobbler. He agrees the antiretinal antibodies are the culprits. He is also not a fan of my HBOT idea. He told me this is a normal part of the process and improvements come in "batches". He said the improvement process is not linear in nature, more of a yo yo. I never have liked yo yos. I pray he is right. I have to remember I was just looking for a degenerative process that was not linear in nature, with a downhill trajectory.

He wants me to leave the driving to him and Gonzalez, relax and let the cells do their work. He is a patient man. I am used to leaving the driving to others, but, as my husband will attest, am notorious for backseat driving. Very annoying for any driver, particularly when I have no depth perception.

He also advised me to start taking a particular supplement. My internist is an expert on supplementation, so I get his advice on which supplements to take. When I asked him about this one, he promptly scheduled an appointment for us to talk, off the clock.

There are only two times physicians have done anything for me "off the clock". It is either the delivery of bad news or an invitation to go out for drinks. Since my internist is obviously very much in love with his gorgeous nurse who is also his wife, I really do not think it is the latter. So, I am meeting iwth him first thing Monday morning.

Color Vision Declining

2007-06-07T05:50:00.001-07:00

Today the improved color vision is going. My daughter has a hair bow to match every outfit. Over the past month, I got lazy about ordering them by color. I could just depend on my sight to tell me which was yellow, etc.

I bought different types of bows for this reason. For example, if they are two colors that look similar, I make sure one bow is larger or distinctive in some other way. I did fall in love with a set of yellow bows that look exactly like a set of pink ones. Pre-implant I would put them on separate parts of the bow holder.

I have not done this lately because I could just look at them and tell pale yellow from pale pink. Today I asked her to pick the bow that matched. It is a good thing she knows all of her colors.

The Downturn

2007-06-06T11:31:00.001-07:00

Documenting the downside is not nearly as much fun, but I promised a number of RPers I would be completely open about the entire experience. So, I was brought up with values that can be most inconvenient sometimes. Now is one of those times. I do not really like dwelling on decline, but I told you I would keep you posted.

The ability to easily read standard print was the last thing to come and the first to go. This started to slip around the same time as the contrast sensitivity. Today is the first day I have noticed the fields starting to close back in. My vision is still slightly better than it was prior to the implant, but the dramatic gains I experienced are gone.

I decided to delay my HBOT treatments until after my next implant. Mainly because I am looking forward to my daughter's birthday and going to the beach.

I have received multiple emails about some more work being done at Moorfields, where they have apparently already restored vision in people with retinal degeneration using their own cells. Why did the Foundation Fighting Blindness not include that in their newsletter? Maybe they did and I just missed it. They are helping fund the gene therapy work in the UK, which is a good thing.

Below is information from Reuters about the stem cell research in the UK. While the article discusses ARMD, the work done would most likely apply to RP as well:

Scientists plan stem cell cure for blindness
By Ben Hirschler Tue Jun 5, 4:07 PM ET
LONDON (Reuters) - British scientists plan to use stem cells to cure a common form of blindness, with the first patients receiving test treatment in five years.

The pioneering project, launched on Tuesday, aims to repair damaged retinas with cells derived from human embryonic stem cells. Its backers say it involves simple surgery that could one day become as routine as cataract operations.
They believe the technique is capable of restoring vision in the vast majority of patients with age-related macular degeneration (AMD), a leading cause of blindness among the elderly that afflicts around 14 million people in Europe.
Some drugs, like Genentech Inc.'s Lucentis, can help the one in 10 patients with so-called "wet" AMD and U.S. biotech firm Advanced Cell Technology is looking at stem cells in other eye conditions. But there is no treatment for the 90 percent with "dry" AMD.
AMD is caused by faulty retinal pigment epithelial (RPE) cells, which form a supporting carpet under the light-sensitive rods and cones in the retina.
The new procedure will generate replacement RPE cells from stem cells in the lab, with surgeons then injecting a small patch of new cells, measuring 4 by 6 millimeters, back into the eye.
U.S. DONOR
The London Project to Cure AMD brings together scientists from University College London (UCL), Moorfields Eye Hospital in London and the University of Sheffield.
It has been made possible by a 4 million pounds ($8 million) donation from an anonymous U.S. donor, who the project's leaders said had become frustrated by U.S. curbs on stem cell work.
Embryonic stem cells are the ultimate master cells of the body, giving rise to all of the tissues and organs. Their use is controversial because many people oppose embryo destruction, although Britain has encouraged such research.
Surgeons at Moorfields have already restored the vision of a few patients using cells harvested from their own eyes, which were moved to a new site. But this process is complicated and only a small number of cells can be moved, limiting its use.
By injecting RPE cells derived from stem cells instead, Dr Lyndon Da Cruz of Moorfields hopes the operation can be reduced to a simple 45-minute procedure under local anesthetic.
"If it hasn't become routine in about 10 years it would mean we haven't succeeded," he told reporters. "It has to be something that's available to large numbers of people."
Similar tests on rats have already proved highly effective.
Pete Coffey of UCL, the director of the project, said he was confident the procedure would work in humans but the team needed to ensure the safety and quality of batches of cells, which would take time.
"The goal is within five years to have a cohort of 10 or 12 patients to put the cells into," he said.
The project, which is non-commercial, was welcomed by patient support groups. Alistair Fielder of the eye research charity Fight for Sight said it represented a real chance to tackle a hitherto untreatable condition.

The thing that is exciting to me about this is both the gene therapy research and the stem cell work is being done in the same place. This means, just maybe, these researchers are playing in the same sandbox with the possibility of sharing toys. One can hope they are collaborative, anyway. Maybe they will combine modalities and come up with something that could truly revolutionize the treatment of these diseases.

It could be revolutionary if they do not suffer from the truly blinding scientific myopia of "cannot confound my data with more than one variable at one time". This may seem logical to you if you spend your day in a lab, go home in your own car and toss your keys wherever, knowing you will be able to find them later.
If you are going blind, losing control of your body functions due to ALS or remembering playing soccer from your wheelchair thanks to MS, you are looking for therapeutic interventions that work and expect them to be tested as such.

According to this article, this work in the UK is funded by an American who was frustrated and gave $8 million dollars for someone to do somthing other than the intellectual equivalent of bicep curls. Firstly, I am really impressed they can do anything with $8 million dollars, if that figure is true.

I do not know what the British equivalent of the FDA is, but if they are already doing this in humans it must have some sensible guidelines and exceptions for certain diseases. The impression I get from this article is that they went from rats to people. Does anyone know if that is true?

In the US, we would still be working our way through the barnyard. I believe it may be rats, then dogs and pigs and finally people, followed by a lot more people? Someone once told me that one rat with RP costs $40k. They use people to test safety, then more people for efficacy, still then more people....Oh and you have a separate group of people who believe they are being treated but are not, to test the treatment against the placebo effect. Yet, Americans die all of the time due to drug reactions, even though the prescription drugs were taken as directed. I am puzzled. Maybe Darran can clarify for me. You can now leave comments anonymously and without registering. As an aside, I really appreciate those of you who have taken the time to comment. It is easier for me to keep up with and very encouraging.

If Moorfields is looking for someone who is willing to have gene therapy and then get a stem cell operation using my own cells or another source of cells aside from embryos, I will fight with you in line to be their girl.

Appointment with Retinal Specialist

2007-06-04T12:27:00.000-07:00

Today was my appointment with my ophthalmologist who is also a retinal specialist. The appointment was not confrontational at all. I chose him because he is both brilliant as well as unusually socially well adjusted. Today reminded me of the ways in which he is different from the retinal specialists I have known in the past. He spared me paternalistic, condescending lectures.

So, I took an acuity test. It is the Snellen test. My last acuity test in his office was last spring, prior to the implant. On April 23rd, I had a Snellen test as well.

On the 23rd, my left eye had shown a 20% improvement. Today, it was back to its pre-implant baseline. I am not going to publish details of my vision figures on the internet, for a myriad of reasons.

The reason I did not blog about the positive results I had on the 23rd is that it was a test given to me by my husband, in our living room. My husband also gave a Snellen test to me prior to my procedure. It showed the same acuity figure I received in my retinal specialist’s office. My husband used to run a research lab (non medical) and we do this testing at the same time of day, same lighting conditions, same place, etc. Still, it is in our home so I did not want to write about it until I had some confirmation.

Over the past three days, I have noticed some decreases. Reading standard print is tiring again. The contrast sensitivity is decreasing.

We went out to eat last Friday. My son thinks it is great fun to drop his cup. A couple of weeks ago, spotting things when he dropped them was the highlight of my day. Well, last weekend finding things he dropped became challenging again.

I talked to my retinal specialist about what I had experienced. He and I agree that you can either read a newspaper or you cannot. It is not a “mind over matter” kind of an issue. I wish, in the interest of scientific inquiry, I had gone to see my specialist when I was at the apex of my functional gains. My son had major oral surgery, still I wish I had made the time.

I still feel like my fields are more open. I am doing a battery of testing: EOG, ERG, dark adaptation, angiogram, visual field test, fundus photos, etc. Why you ask?

I am going to go back and get another stem cell implant. Last time, Dr. Sapse advised me to get ozone therapy when I came home. I could not find anyone who did it and, quite frankly, have a life in addition to my lovely pastime as an RP patient. But, my curiosity got the best of me and I did some research.

His rationale of getting more oxygen to the new cells made sense. So, while I know no one who does ozone, I do have access to a hyperbaric chamber. I also perused PubMed and found some articles on hyperbarics and RP.

I am planning on going to Progreso again in September or October, depending on the doctor’s availability. Next time, I am going to follow up the implant with a month of hyperbaric treatments. This experience leaves me with some ideas:

I) I believe that, in my case, the cells did do some repair work. I feel it is most likely being partially undone by the mutant gene (or genes or combination of factors) that causes the retinal cells to commit cellular suicide. In other words, these fresh new cells were corrupted by this bad influence of a gene(s). However, I think it is more complicated because:

II) Two siblings can both have an identical gene for RP. One will be very visually impaired, the other only night blind. So, it is not so simple as being purely genetic, in the sense of one gene causing a problem. There is some sort of trigger in addition to the gene that causes the deterioration. I do not have a citation on this, but you might want to check out Dr. Stone’s work at the University of Iowa. I recall information, but cannot always remember exact citations.

III) In some people with RP, I believe that this process is part of an underlying systemic autoimmune process. Dr. Sapse published work on this decades ago, Johns Hopkins more recently. I do not have the citations, but remember the Johns Hopkins data something like this:

a) In 70% of people with RP and CME (Cystoid Macular Edema) there is a presence of antiretinal antibodies in the sera. In only 7% of people with RP and no CME, these antibodies were present. My conclusion, and I am a liberal arts major so take it with eight bags of salt, is that while RP looks the same in people’s eyes, it is actually different disease processes. I believe that my RP is part of an autoimmune process, that my retina is not immunopriveleged (meaning it is not exempt from being attacked by my body)

Initially this conclusion about my RP was intuitive, then I had a series of experiences that added more logic to the equation.

It was intuitive because I had a whole host of autoimmune issues (yes, I was screened for Lupus and other known systemic conditions). I am young, fit and live a very healthy lifestyle. So, it seemed awfully coincidental that I had all of these concurrent autoimmune conditions, which were confirmed by several doctors and interfering with my life.

Then I had an allergic reaction and had to go to the ER. I was put on very high doses of oral steroids. My vision improved within three days. I found the antiretinal antibody research from Johns Hopkins. During this time, I also approached a number of doctors for oral Prednisone, none of whom would give it to me. Something about gaining a hundred pounds, my bones breaking, cataracts and immunosuppression. I guess I can see their point. But, I found my way to an awesome internist who employed a number of techniques to get my inflammation down. Everything improved but the eyes.

So, it was believed that the response I had to the Prednisone was due to the inflammation in my eyes. Since oral Prednisone is apparently quite nasty, I started getting injections directly in my eye of steroids. These were delivered locally, instead of systemically like the oral Prednisone

I had no visual improvements after the steroid injections to the eye. So, the prednisone worked systemically and my vision improved. The injections worked locally and it did not.

I know medical types can give me a million other reasons why this could be due to other variables. But, I believe my RP is systemic in nature. It is intuitive to me.

So, what next? I feel the missing component is controlling the autoimmune response, which may or may not be possible with the gene (s) in place that were triggered. Dr. Sapse believes the GH-3, which lowers cortisol, does this. I do not know. I will continue to take it. I have done everything I can do naturopathically to control inflammation and modulate my immune system. So, we shall see.

Someone emailed me about a gene therapy operation in the UK. Check out more info on the trial here:

http://www.cbc.ca/health/story/2007/05/01/sight-gene-therapy.html?ref=rss

It would be interesting to see how altering the gene, then systemically implanting placental or adult stem cells and following up with a healthy dose of oxygen therapy would work. Anyone with $150,000,000 burning a hole in their pocket should fund a trial and find out. Or, they could simply try systemic stem cell delivery on the gentleman that just got the gene therapy operation if it does not have the desired result on its own. Start wtih gene therapy, deliver stem cells systemically and end with three months of HBOT. At least, if this housewife with a high speed internet connection had it her way, that would be the case.

I also have to remember my goal when I received this implant. I was looking for anything that could just hold off the progression. My results were totally unexpected. Then, greed kicked in and I had fantasies of driving again.

So, one step at a time. I will keep writing about my experiences as a human guinea pig if you keep reading. One thing is for certain: God is in control. All of this may be a huge lesson in humility, which I believe is valuable in and of itself.

Stem Cells Home to Damaged RPE

2007-05-29T09:28:00.000-07:00

I have nothing new to report. I do not perceive any further changes, positive or negative, in my vision. I have scheduled an appointment with my ophthalmologist. I am sure that will be a lot of fun (sarcasm). Oh, he is a nice guy. This situation just puts us in adversarial positions, unfortunately. He cannot condone my choices because they are outside the establishment. I cannot follow his advice. So, I guess it is a stalemate.

This situation has peaked my interest in how these cells could penetrate the blood/brain barrier. To my understanding, science considers this blood/brain barrier a major obstacle to treating the retina. Yes, I have spent entirely too much time reading about this stuff. Time that should have been spent learning to tango or enjoying fine wine, I suppose.

Anyway, I digress. I started surfing PubMed looking for stem cell research for retinal degeneration that relied on a systemic approach, meaning the cells were not put in the eye but delivered intraveneously or under the skin.

Granted, this work involves a rat and bone marrow- derived cells. If you are interested, see the abstract below:

Systemically transferred hematopoietic stem cells home to the subretinal space and express RPE-65 in a mouse model of retinal pigment epithelium damage.
Atmaca-Sonmez P,
Li Y,
Yamauchi Y,
Schanie CL,
Ildstad ST,
Kaplan HJ,
Enzmann V.
Department of Ophthalmology & Visual Sciences, University of Louisville, 301 E. Muhammad Ali Blvd., Louisville, KY 40202, USA.
Stem cell regeneration of damaged tissue has recently been reported in many different organs. Since the loss of retinal pigment epithelium (RPE) in the eye is associated with a major cause of visual loss - specifically, age-related macular degeneration - we investigated whether hematopoietic stem cells (HSC) given systemically can home to the damaged subretinal space and express markers of RPE lineage. Green fluorescent protein (GFP) cells of bone marrow origin were used in a sodium iodate (NaIO(3)) model of RPE damage in the mouse. The optimal time for adoptive transfer of bone marrow-derived stem cells relative to the time of injury and the optimal cell type [whole bone marrow, mobilized peripheral blood, HSC, facilitating cells (FC)] were determined by counting the number of GFP(+) cells in whole eye flat mounts. Immunocytochemistry was performed to identify the bone marrow origin of the cells in the RPE using antibodies for CD45, Sca-1, and c-kit, as well as the expression of the RPE-specific marker, RPE-65. The time at which bone marrow-derived cells were adoptively transferred relative to the time of NaIO(3) injection did not significantly influence the number of cells that homed to the subretinal space. At both one and two weeks after intravenous (i.v.) injection, GFP(+) cells of bone marrow origin were observed in the damaged subretinal space, at sites of RPE loss, but not in the normal subretinal space. The combined transplantation of HSC+FC cells appeared to favor the survival of the homed stem cells at two weeks, and RPE-65 was expressed by adoptively transferred HSC by four weeks. We have shown that systemically injected HSC homed to the subretinal space in the presence of RPE damage and that FC promoted survival of these cells. Furthermore, the RPE-specific marker RPE-65 was expressed on adoptively transferred HSC in the denuded areas.
PMID: 16949576 [PubMed - indexed for MEDLINE]

Safety and FDA Issues

2007-05-22T13:51:00.000-07:00

I have been receiving emails as well as messages on forums regarding patient safety. These come from "patients" with extremely sophisticated medical vocabularies and concerns about FDA clinical trials issues.

If you are genuinely interested in learning more about placenta stem cell therapy, please access the link below. The procedure is explained in detail. There is also a reference to a journal if you have an academic interest.

If you are interested in the procedure and have safety concerns, please contact Dr. Gonzalez directly. His email is listed under "contact us" on the page below. He is in a better position to discuss these issues with you.

http://aculongevity.com/PST.html?

Read the Newspaper

2007-05-19T19:15:00.000-07:00

While waiting at the hospital, I picked up a newspaper and read it. Since my mind was on other things, it did not strike me until later. I had just read the paper, without reading glasses.

I remember, years ago, enjoying my weekend mornings while reading multiple papers. Then newsprint became such a struggle I just stopped.

I am realizing how many concessions I have made for this disease over the years.

Visual Field Changes

2007-05-16T23:22:00.000-07:00

Visually, the main thing I notice is the change in visual field. My life has lost its' " I Dream of Jeannie" quality. Do you remember that show? It was a childhood favorite of mine.

Do you remember how Jeannie would just appear in front of people? That is how things were for me before. People just appeared in front of me all of a sudden. Now I can see someone enter the room out of my peripheral vision.

Money Matters

2007-05-15T09:45:00.000-07:00

In the interest of open disclosure, I would like to tell those following my story that my husband and I have invested funds with StemCell Pharma. Given that we do not have much money left after all of my medical experiments, it is not a large amount. However, I do think it is important that people are aware of it. Since this company is the only of its' kind in the US and I received results, we felt it was a good opportunity for us.

I did not foresee becoming a voice for this treatment. Had I known things would evolve in this way, I probably would not have chosen to invest as it can cloud credibility. If I receive a positive ERG, I will go to the media. At that point, my husband and I will divest ourselves of any financial interest.

However, I think one would have to be a sociopath to have RP and lie to others with it. I have done unkind things that I am not proud of, but do not qualify for this label.

This treatment is very experimental at this point in time. I am just one voice expressing one set of experiences. I cannot predict if my results will last or not, but I will continue to record changes as I experience them.

My posting over the next couple of weeks will be more sporadic. My son was born with a cleft palate which is being repaired on Friday.

Read Standard Print for Two Hours

2007-05-14T19:34:00.000-07:00

While navigating the airport still requires the use of my compensatory "bag of tricks", I did have an exciting experience these past few days. I read a book for pleasure.

I used to be a voracious reader. I read anything and everything. One day, I noticed I no longer enjoyed reading. It had turned in to work. It is not that I could not read, it just took so long and required a lot of concentration.

Since I have modified my computer for my vision, I started using it for all of my reading. This is okay for getting information, but cozying up with a computer screen is not the same as a great novel on a rainy day. So, I just stopped reading fiction, bought an i-pod and started listening to music more often.

Before going on this trip, I went to the bookstore and purchased a book simply because I wanted to read it. I did not buy it based on the size or relative thickness of the font. Oh, this was nice.....Then, to actually be able to read it with relative ease, for two hours in a row. It was, quite frankly, a slice of my own little personal literary heaven!

Counting Blessings

2007-05-10T02:51:00.000-07:00

I am leaving town to visit my mom for Mother's Day. It will be interesting to compare how challenging it is to navigate the airport.

I have so much for which to give thanks this Mother's Day. Two happy kids, an unconditionally supportive husband and improving vision.....Wow!

It is pretty amazing that I have had the opportunity to explore so many treatment options. To have the time, the money (okay, credit limit and coins found in couch cushions), a spouse who suspends all disbelief and supports me....God has been very good to me.

My General Health

2007-05-08T07:47:00.000-07:00

Starting last summer, I began seeing a unique doctor of internal medicine in San Antonio. Dr. John D. Hernandez, of the Center for Wellness and Integrative Medicine, and I worked together for many months prior to my stem cell implant.

He did multiple nutritional and conventional evaluations. I took many supplements, in various dosages. Every six weeks to three months, we would assess my situation and make changes.

Under Dr. Hernandez's care, I cut out all foods linked to inflammation, such as those containing gluten and refined sugar. My diet was one of whole organic foods, mainly lean protien, fruits and vegetables.

While my vision did not change during this time, my asthma and arthritis did respond. My fingers and toes are still constantly cool, but not freezing and uncomfortable like they were.

Before I found my way to Dr. Hernandez, I was on both albuterol and corticosteroid inhalers as well as Singulaire for asthma. I relied on albuterol every three hours during the day. I had a painkiller prescription for my arthritis pain, but usually used Advil in the mornings. I caught every cold my daughter brought home from preschool. I required ten hours of sleep a day. Getting out of bed in the morning was an act of pure will.

When I received the implant in April of 2007, I was completely free of prescription drugs for the first time in years. My energy level had greatly improved. I had two minor colds in six months. These colds only lasted a couple of days, as opposed to ten days which had become my norm prior to making these changes.

Weird Feeling

2007-05-07T09:44:00.000-07:00

The strangest aspect of this experience is going about life as usual while something remarkable is happening in my body. I find myself thinking, "Wow, I could not see that last week." The next thought will involve something totally mundane, like sorting the mail or making a phone call. Very weird...

Festival Fun

2007-05-06T16:16:00.000-07:00

Yesterday I went to a festival with my family. I am usually not a big fan of such events. Navigating the throngs of people can be disorienting. Not only was I able to avoid running in to people, I did not say "excuse me" to any inanimate objects. I also found my way, without my husband, to the watermelon stand while pushing my son in the stroller. My husband was floored that I had the confidence to take my son, in his stroller, in an unfamiliar environment. Not only that, I was able to locate what I wanted using my vision, not my memory. Of course, watermelon is a very powerful motivator. :)

Today we had a party for my son's baptism. Numerous people commented on my increased confidence when walking and my ability to find things.

After the party, I did my weekly shopping. I notice I am able to walk, look someone in the eye and smile at the same time. This is such a blessing and feels so good. It has been a long time since I have been able to do that. Usually, I focus on walking and cannot really focus on people, much less making eye contact with them.

NIght Vision for the First Time

2007-05-04T05:18:00.000-07:00

Last night I got out of bed. My husband was asleep, so I did not turn on any lights. Usually in this situation, I navigate by memory and feel. Normally things look inky and black. I usually do not rely on sight at all in the dark.

Instead of everything being black, it was just dark. I could see the outlines of things around me.

It was so surreal. I remember looking over to the blinds, thinking my neighbor must have bought stadium lighting or something.

There is a picture of my husband and me on our bedroom wall. Last night was the first time I have seen this picture when it was dark. I actually walked over to the picture and touched it, to verify that what I thought I saw was actually there. Not only could I see the outline of the picture against the wall, but I could make out the location of our faces. I do not remember ever seeing like this at night.

I walked in to our living room and could see where the rug stops and the tile begins. I saw where the window coverings where. I saw the bar. I could see the outline of family photos against the wall. It was still dark, but wasn't inky black, impenetrable darkness.

This is the most confirming change I have experienced so far. It is easy to second guess and doubt myself with the visual field and contrast changes I have noticed. Night vision is more concrete. It is either black or it is not. Last night it was not black for the first time that I can remember.

Contrast Vision Improves

2007-05-03T05:42:00.000-07:00

Yesterday my daughter had dance class. After her class, we go to the dollar store. She picks out toys. We were standing in line to check out and I dropped the red ball she selected. Usually, when I drop something, it is just gone. I wait for someone else to pick it up. Yesterday the red ball landed on the counter, also red. I spotted it quickly and handed it back to the cashier.

Found the Mystery Box

2007-05-01T12:32:00.000-07:00

Every day when I drop off and pick up my daughter at preschool, I sign her name in with my contact info for the day on a sheet. This sheet is on a clipboard. Usually it is on one of two different tables, though people put it back in different places. There is also a pen that is unattached from the clipboard. Usually, I wait for someone else to sign their child in and hold my hand out so they can hand me the pen and clipboard. This way I do not have to scan the tables to find it. Today I walked in, saw the clipboard and the pen next to it. It was a white pen on a white table top.

In my daugher's classroom there is also a box with files in it. Each child has a file with their name on it in the box. Parents are supposed to go to the box, find the file with their child's name on it and get their work. Well, the teacher tells me about this mysterious box regularly. I smile and nod. Then I promptly tell my husband to grab my daugher's work out of the box when he does occasional pick up. Today I found the box and my daughter's file in it.

Disclaimer

2007-04-30T15:20:00.000-07:00

When I initially started this blog, it was to record the changes I experienced in order to both remember them as well as share with friends of mine who have RP. I did not intend, at that time, for a wider audience. That is why I did not link to other blogs, etc.

The way things have evolved, it is now read by a wider group of people with differing interests. So, I feel the need to reiterate that nothing I have reported has been independently verified. These are just one person's perceptions at this point in time. It could be a real improvement or a psychological byproduct of simply wanting something so desperately to be true. Time will tell.

I plan on scheduling an ERG (electroretinogram) this summer. My last one is three years old, but showed pretty much nothing. So, short of a negative score, I do not know if using a newer one as a baseline would make much of a difference. Of course, I am not a doctor or a scientist.

Spotted Doors

2007-04-30T06:47:00.000-07:00

Every morning I unload the dishwasher and put away the dishes. Usually, I make sure to close the doors on the cabinets each time I put away a dish. This way I do not hit my head on the corner. Today I noticed I can put away the dishes while leaving the cabinet doors open. I am able to spot the open doors and do not hit my head.

Now if I can actually have shins with no brusies on them that will be an accomplishment. Hey, I have nothing against looking like I play field hockey except for the simple fact that I don't. :)

2007-04-29T08:56:00.000-07:00

Last night my husband and I went out to dinner. While seated at the table, everything began to flicker. It was like looking at a television set of really low quality. I asked him if he noticed it , he didn't. Later, it stopped. Since, it starts and stops at various times, but is not distracting like it was last night.

I also was able to spot curbs and stairs without looking for them.

2007-04-28T08:09:00.000-07:00

Today I have the sensation of broader fields of vision. While my son eats breakfast in his high chair, I usually sit across from him and have my morning tea. I could look at him this morning and see the tea as I raised it to my face. Not only did I see the cup, but I could see the light reflecting off the tea inside it.

I remember experiencing visual field changes after receiving acupuncture, three times a day for two weeks. This is a similar experience.

In the past, the improvements have always been fleeting. So, it is with cautious optimism that I welcome these changes now.

2007-04-27T17:52:00.000-07:00

Today the contrast does not seem so overwhelming. The colors still seem very bright, but it is not agitating.

My husband as well as a good friend mentioned that I seem more confident as I navigate my way around.

It is hard to believe.