Determined to See

Late Stage RP Sufferer Yields Ongoing Vision Gains with Curcumin, Black Pepper and Ginger

Written By: ingridricks - Sep• 01•22

Steve Fialkoff was only trying to boost his immune system when he started ingesting 250 milligrams of curcumin daily last December. The sixty-eight-year-old New Yorker had contracted Covid-19 and hoped the plant-based supplement — which is known for it’s anti-inflammatory and antioxidant properties — would help combat the virus. 

He didn’t give it much thought until February 8th, when he was out walking his guide dog. Usually Steve could see half of his dog’s head, one of his eyes or his tail wagging in a blurry narrow tunnel. But that morning, when he looked at his dog, Steve says he could see his entire head, whole body, individual hairs standing up and his tail all in one glance.

“Then I looked down on the sidewalk and realized that I could see the side of an apartment building and cars parked on the curb,” Steve adds. “In December, or even a week earlier, I wouldn’t even have been able to tell where I was because my vision was so narrow.”

Steve, a two-time Emmy-winning video editor who was forced to leave his career when his vision closed in on him, was convinced he was hallucinating. But when he returned to his Manhattan apartment and walked into his kitchen, he noticed that instead of seeing only one burner on his four-burner stove, he could see three and a half. And the only thing he could conclude is that his sudden jump in vision was connected to the curcumin he was taking.

His daughter did a Google search for the key words curcumin and Retinitis Pigmentosa and was immediately directed to a May 2021 research paper in which Italian researchers compiled all the studies done to date on curcumin and its positive impact on retinal diseases.

“The 30-page document talked about a study in which curcumin was fed to rats with RP and theorized that it would take a dose of three or four grams in people with RP to achieve the benefits,” notes Steve. “That’s a mistake because I was only taking 250 milligrams.”

In closer inspection of the label on his curcumin supplements, Steve discovered that it recommended 500 milligrams daily so he started taking it more religiously and upping the dose. On March 11th, Steve experienced another jump in vision. This time, he says he could see leaves on trees and people walking toward him.

Steve racked his brain, trying to figure out what else he was doing that could account for his vision gains. Once again, he pulled up the 30-page article on curcumin and retinal diseases. But this time, he decided to comb through it carefully in its entirety. Most of it, says Steve, was “garbley-gook”. But then he got to the end of it and discovered that the key to activating curcumin is piperine, the active ingredient in black pepper. According to the article, twenty milligrams of piperine increased curcumin absorption by two-thousand percent. Steve also discovered that it took about forty-eight hours for the curcumin to get into the retina after ingesting the two.

He started thinking about the ginger chicken he had ordered from his favorite Vietnamese restaurant three days earlier. It was a dish that contained an extensive amount of black pepper.

“I had my daughter check my credit card receipts and discovered that the last time I had ordered that dish was on February 4, a few days before my first jump in vision. I thought, aha, here it is. I accidentally took curcumin and accidentally took black pepper and it’s generating vision gains.”

Steve, who has the Usher 2a form of RP, was so excited by his discovery that in April he reported his vision gains to his retinal specialist. She conducted a visual acuity test and discovered that the vision in his right eye had increased from 20/400 to 20/250. Beyond that, Steve estimates that his central visual field has expanded to about six degrees, a big jump from the narrow two-degree hole he had been seeing out of. Because eye doctors had stopped measuring his visual field a decade ago, there was no way to measure that expansion during his visit. What’s more, Steve says his retinal specialist wasn’t interested when he told her his vision jump was due to curcumin.

Steve, who had heard about other treatments such as acupuncture and Chinese herbs that had helped RP sufferers for a month or two but then stopped working, sometimes had doubts and waited for the other shoe to drop. But he kept adding black pepper to his meals and kept taking the curcumin and his vision gains held steady. In July, he decided to look up the recipe for the ginger chicken dish that had precipitated both jumps in vision. That’s when he discovered that a heavy dose of black pepper was sautéed in oil with ginger for several hours. In further research, he learned that heat and fat also help with activation and absorption of curcumin, and that ginger is also beneficial for the retina. Steve began replicating the recipe at home and, two weeks later, he experienced another jump in vision. This time, he noticed that he could see when walking through a scaffolding tunnel where the light was lower, something he hadn’t been able to do for several years. He also noticed that he could see more detail in bright light.

He decided it was time to call the Foundation Fighting Blindness to share his vision gains with curcumin. He was routed to their science reporter, who noted that an Indian researcher they fund had identified curcumin as having a positive effect on a rare form of RP. But he also said they would need more double-blind studies to confirm this finding.

“I wasn’t going to argue with this guy,” notes Steve. “I didn’t want to sound like a petulant brat. But I know in my heart we don’t need a double-blind study. We need a study, with twenty or thirty people, and if they don’t go blind and some of them get better, then something is happening.”

This is where Steve comes in. He has launched his own informal curcumin experiment and currently has twenty people — most with RP and a few with other retinal diseases — on board. Not everyone is following his regimen. Some are ingesting piperine supplements with curcumin supplements. Others are experimenting with whole turmeric — the plant responsible for curcumin. Still others are mixing both turmeric and ginger. Steve will be sharing the results as they come in.

He doesn’t know if his curcumin concoction works for every form of RP or whether his eyesight will continue to improve. But for him, the vision gains he has experienced over the past eight months are nothing short of miraculous.

“In a way, it’s a good thing that I was almost blind. Because if my visual field was 15 or 20 degrees and I still had good central vision, I probably wouldn’t have noticed the vision gains and would have eventually stopped taking curcumin,” notes Steve. “Before, I would say that I was 98 percent blind. Now I estimate that I am 93 percent blind and back to the vision I had in 2018. I’m just going to keep going and see what happens.”

If you would like to join Steve’s curcumin experiment, please email him at: tinymustacheprods@gmail.com

To read the May 2021 article on curcumin and retinal diseases, click here.

To read the January 2022 article on curcumin and retinal diseases, click here.

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4 Comments

  1. Ricki Lewis says:

    Great article and great news! Steve I’d like to follow up with you on this. I’m a geneticist and science writer, went to high school with you.

  2. steve Fialkoff says:

    Look forward to chatting and to help get more research done for the treatment of this disease. The Sight is the End … goal.

  3. Alysa Salzberg says:

    Wow, what amazing news, and bravo to him for sharing his findings and trying to learn more! I hope that the study yields even more promising results and will end up helping so many people!

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