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.
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5 comments:
Wanted to know what your thoughts were on the latest annoucement by Dr. Sapse's latest annoucement of another stem cell transplant for 16 year old Elisha Gonzales. She's evidently experiencing the same initial success you had. I'm curious to know whether she will see continued improvement or gradual tapering off of benefits.
Wanted to know your thoughts on Dr. Sapse's recent annoucement of another stem cell transplant patient, 16 year old Elisah Gonzales. She's experiencing initial improvement as you did. It would be interesting to see her improvements will continue or taper off.
Hi Linda,
I read about her response. I hope and pray that her results continue and are stable. Maybe her youth will help.
Nat, the MicroStim device was recently recommended to me. What kind of protocol did you follow with the MicroStim? Did you get it from Dr. Gene Bruno? Did you follow his protocol? Did you notice ANY effects? I did notice on his website that all his testimonials are from people with Macular Degeneration. I wonder why it helps MD but not RP?
Another thing that was recommended to me was the Natural Vision Improvement Kit that is based on the Bates method and consists of specific exercises that both relax and strengthen eye muscles. Have you tried that?
Hi Tina,
I have tried something similar through Dr. Damon MIller and Grace Halloran. I really cannot make a true assessment as I only stuck with it for maybe four months before becoming discouraged. It was also a time in my life when I was working and studying sixty plus hours per week. So, my stress level was relatively high as well.
Recently I ordered a newer version of the MS unit that only takes five minutes. From what I have learned through Grace (who had RP and published a book called Amazing Grace), these treatments can help improve visual functioning thus improving quality of life BUT the vision will backslide when you stop using them. If I can stay disciplined enough, I am going to give it another try this year.
As to why it works for MD and not RP to the saem degree, who knows? It could be numbers, in that it is more widely used for MD therefore there are more people with documented results. Also, the MD Foundation funded research in to MS which had some encouraging results.
It could be that it is not really that effective for advanced RP. COuld be those with MD tend to be older when diagnosed and try things earlier in the disease process than those of us diagnosed as kids and teens. There are many possible explanations.
My personal philosophy is to try and see for myself.
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