Appointment with Retinal Specialist

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.