#1 Therapies for RP? by ivandic 31.01.2016 12:39

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To all patients with RP out there!
I would liked to collect all therapies and medications that are used by RP patients. Please tell us what you use(d), what dosage, who recommended the therapy and what effects you noticed. I would like to read up original research papers on these therapies to understand and discuss these recommendations.

#2 RE: Therapies for RP? by Nat 04.02.2016 02:06

You asked about therapies used for RP by various practitioners as well as associated research. I will do my best to be brief and can provide more detail privately. I list them in no particular order.
1) Microacupuncture- This is acupuncture delivered to the feet. I tried two different practitioners both of whom were trained by Per Otte, formerly of the Arkansas Therapy Center. I went to both the Arkansas Therapy Center (Hot Springs, Arkansas) as well as to Dr. Elizabeth Tukan , an ophthalmologist in Arizona. Dr. Tukan did extensive testing and the results were promising—a three line improvement on an acuity test. Unfortunately my gains never lasted more than nine weeks.

I know one of Per Otte’s pupils, Dr. Andy Rosenfarb, has worked with Dr. Ava Bittner formerly of Johns Hopkins University to do a pilot study. Dr. Bittner now is running a larger study out of a university in Florida. In the small pilot study some patients saw gains in dark adaptation that persisted after a year. I do not know which points were used in the JHU study, but that should be available in the literature.

2) Acupuncture using TCM points-Again, I do not know if the JHU study used TCM or micro points. I went to a TCM practitioner every two months for two weeks at a time for a total of eighteen months. Temporary, fleeting results even though the points were totally different from the microacupuncture points, the results were similar. I also tried a local acupuncturist, taking Dr. Rosenfarb’s book on Traditional Chinese Medicine and Ophthalmology to him. My hope was to replicate the results of other practitioners in my home city, I never saw any results doing this.
NOTE: An interesting parallel among practitioners specializing in RP is that they seem to have come to some conclusions independent of each other, like treatment duration, timing and frequency. It all boils down to a LOT of acupuncture with a big investment of money and time.
3) Microcurrent Stimulation and vitamin therapy- Dr. Damon Miller and the late (and great) Grace Halloran pioneered this treatment for RP and AMD. A version of it (transcorneal electrical stimulation or TES) is now being tested in the clinic. Grace, a patient herself, pioneered this work decades ago but the establishment did not care to invest in trials at that time. The TES trial results have not been as good as they would have liked. More on that is available in the literature. I did not have any results.

4) Stem cells-Some RPers have been in true stem cell trials, like the one in Florida, Brazil, AIIMS in New Delhi, Spain—These trials involve intravitreal or retrobulbar injections of bone marrow derives (or placental derived) stem cells. There is also a doctor in Florida who charges patients to be in his trial. Some report some small improvements that are maintained for the study length. Others go to less reputable clinics and get systemic stem cell implants.

I did this and it tripled my red blood cell count. I noticed an improvement and was able to read a paper for the first time in years. Unfortunately, when my red blood cell count normalized, my ability to read print went away again. However, this is where I learned the importance of increased oxygen to the retina.

5) HBOT or Hyperbaric Oxygen Therapy- I did this based on an Italian case study. Aside from getting a barotrauma, I noticed improved night vision. However, like acupuncture, it was expensive and time consuming.

6) Vasodilators- I do this based on the work of Frasson, the Mexican study as well as the more recent research by Dr. Hiroshi Ohguro as well as Dr. Konieczka’s work out of the University of Basel. Konieczka was the first to notice vascular issues primary to changes on ophthalmoscope. Cellini noted elevated levels of ET-1 in the blood of RP patients. This challenges the long held notion that the vessels shrink secondary to cell death.

7) And, even if they do, treating them with drugs that have been around for decades with low risk profiles can make a lot of sense. I would take nilvadipine (per Ohguro’s work) if it were available in the US. Instead I take nifedipine, the closest US drug to it. I am monitored by a cardiologist.


8) LLLT- Inspired by your case study, I purchased a WARP10 unit and guessed at the dosage. I later learned from another LLLT researcher that too high a dosage can be counterproductive. So, I got nervous and quit doing it despite the fact that I noticed a small uptick in function that took the form of increased brightness and better color vision.

9) TREATLITE – I am enjoying the ease and simplicity of this unit. It is cheaper than the WARP, I know an actual doctor who can prescribe a dosage and it is easier to use.

10) Lutein, zexanthin and DHA- I take Nordic Naturals Omega Vision based on a body of research that shows positive results.

#3 RE: Therapies for RP? by ivandic 04.02.2016 20:30

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Thank you Nat. That is indeed impressive. Acupuncture left aside because I don't know how and why it works, I would conclude that there are a few things that seem promising: growth factors, improved oxygen delivery, vasodilation and nutritional optimization. I find particularly interesting that HBOT improved your night vision suggesting that peripheral photoreceptors are not completely gone after all and may benefit from targeting retinal ischemia associated with tiny retinal vessels and reduced choroideal blood supply. This retinal ischemia is caused by Endothelin (ET-1 and ET-2), the strongest vasoconstrictor known so far. ET is released from Müller cells in the retina, mainly in response to LIF (leukemia inhibiting factor), a neural growth factor that is released following the decay of retinal cells. The task of Müller cells is support retinal cells but ET appears to be a dysfunctional response that actually makes things worse. Increases in ET are also associated with macular degeneration and even primary open angle glaucoma. Interestingly, systemic ET plasma concentrations were also found increased in RP patients. I wonder why these high systemic ET concentrations don't lead to marked arterial hypertension. In this regard it is probably a good idea to use nifedipine which is a dihydropyridine calcium channel blocker with cardiovascular selectivity. In Germany, we have nivaldipine as a slow-release medication which is said to have cerebrovascular selectivity (ie target rather blood vessels in the head). There is also nimodipin, a calcium blocker which is used to prevent cerebral vasoconstriction after head injury or stroke. Unfortunately, it is for i.v. use only, as far as I know.

more informations on the way ...

#4 RE: Therapies for RP? by Nat 06.02.2016 02:51

Hi Dr. Ivandic! You mentioned not knowing the mechanism of action for acupuncture. I still think many experts are unsure at this point and it probably works in a variety of ways. However, in keeping with our focus on circulation, vasodilation and oxygenation, please reference the following on blood flow and acupuncture:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388479/

A google search for “acupuncture and intraocular blood flow” also brings up more info that I was unable to post. Thanks for your reply!

#5 RE: Therapies for RP? by Nat 12.02.2016 02:50

I have advanced autosomal dominant RP. I started using the TREATLITE in mid-January. I have noticed “pixelated” vision on four separate occasions. It only lasts for seconds, then goes back to normal—or what passes for normal for me.



Since starting the TREATLITE, colors are brighter, like someone turned up the color on a television screen. I was able to read a return address in standard print under optimal lighting conditions for the first time in years. At the supermarket, I was able to spot items on shelves as well as find the car in the parking lot. I am noticing changes, albeit small ones. I find the TREATLITE easy to use, painless and almost effortless.

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