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.
Tuesday, August 21, 2007
Friday, July 13, 2007
Dr. Nolan and ECHO
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
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
Sunday, July 8, 2007
Apple iPhone
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.
Saturday, July 7, 2007
More Rats
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
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15372100&ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Thursday, July 5, 2007
Indian Adult Stem Cell Research in HUMANS!
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
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
Saturday, June 30, 2007
Progressing to Plan B
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.
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.
Tuesday, June 26, 2007
Deflazacort, RP and CME
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
Enter "Deflazacort and Retinitis Pigmentosa" in the search term box.
http://www.ncbi.nlm.nih.gov/sites/entrez
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