The Incurable Gonz Blinko: Supplements and Natural Cures for Retinitis Pigmentosa

By Chris Hofstader

In my continued pursuit of unlikely cures for the presumed incurable retinitis pigmentosa I stumbled onto some articles selling supplements and natural “remedies” for the condition. Unlike acupuncture, homeopathy and other alt-med modalities, if a patient takes a supplement, they put something into their bodies that may cause something to happen. Also, There exists a sizable amount of data published by very real scientists on how some vitamins can actually slow the progress of the disease which makes dismissing the entire modality impossible.

As this column almost always reports on alt-med modalities that do not work, I’ll start this article with the solid bit of positive data in this area. At Massachusetts Eye and Ear, one of the world’s best hospitals and research centers regarding (as you may have guessed) eyes and ears. Back in 1987, I had an appointment there with Dr. Eliot Berson who is also the Principal Investigator on a study of about 600 people with RP over a fairly long period of time. The study, published in 1998, found that people with retinitis pigmentosa who take 15,000 units of vitamin A daily will experience a slower rate of degeneration of their retinas. While not a cure for RP, the data shows that one can continue to have usable vision for much longer if the supplement their diet with this extra vitamin.

While Dr. Berson’s work shows great promise, many alt-med sites that offer no real demonstration of efficacy for their supplement include links to Berson’s work as, if vitamin A, a supplement, can do great things, doesn’t it follow that other supplements will work as well? The answer is, of course, “no” but our friend Google¬† will show you thousands of sites prepared to sell you something that someone, without proof, claims will cure your RP.

The most common claim for how a supplement will help people with RP is that the substance is said and maybe even shown to lower interocular pressure – the pressure the fluids in one’s eyes against the eye walls. Glaucoma, a major cause of blindness, is primarily a problem in which one’s interocular pressure gets too high; increased interocular pressure is a symptom of RP but it doesn’t cause the degeneration of the retina and reliving it for RP patients does nothing to improve vision. Many things, including marijuana, reduces this pressure but it only seems to benefit the glaucoma patients and, among this population, reduction in pressure doesn’t cure the problem but, rather, makes the patient more comfortable which is a good goal if the patients understand what to expect.

It seems that, if one searches far and hard enough, they will find that dozens of different supplements have claims to do something good for people with RP. These include fish oil, omega 3 fatty acids, virtual all vitamins and all sorts of other substances. Unfortunately, there is little or no published evidence that any of these things actually work. Even worse, is that vitamin E has been shown in real clinical trials to make RP worse – a fact that is rarely stated clearly in the retinitis pigmentosa section on supplement sales sites.

Some of the seemingly bogus RP cures claim that their supplement will help increase the visual fields of people with RP. The major symptom of Retinitis pigmentosa is the gradual deterioration of the retina, slowly narrowing the visual fields, first to tunnel vision and then to no vision at all. There is no evidence that anything known can reverse this process but these supplement sales sites continue to claim that their products can help.

The other major point claimed by the supplement vendors is that their product can increase one’s immunity. I’m not sure if this claim is true or not and there is scant evidence to support the claims but, even if they do strengthen the immune system, there is no evidence that this helps people with retinitis pigmentosa.

So, if you have RP or know someone who does, encourage them to read about vitamin A as described in Berson’s work and to avoid all other supplements that make great claims with little or no actual evidence.

When I started at 21st Floor, I said that I would start by writing about retinitis pigmentosa and then move onto other diseases that lead to major disability and/or death. I’m working on a piece about very scientific sounding claims made about stem cell therapies that, in fact, provide no help and are enormously expensive and will do the articles as a series talking about how this fraud is being perpetrated on a lot of desperate people.

Lastly, on January 24, 2011, the first real embryonic stem cell therapy for retinal disorders in the US was conclusively shown to restore vision in at least two people. I find this really exciting but, as the sample size is minuscule, I won’t be holding my breath for a cure any time too soon.

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0 Responses to The Incurable Gonz Blinko: Supplements and Natural Cures for Retinitis Pigmentosa

  1. I would add one caveat. Large doses of vitamin A can under some circumstances be harmful,and if my arithmetic is correct the 15,000 IU mentioned here corresponds to 5 times the regular recommended daily amount.

  2. Gonz Blinko says:

    You are right, I should have included a statement on how enormous doses of vitamin A can be poisonous. According to Berson’s data, the 15,000 IU of vitamin A is safe but as little as 20,000 iU can build up in the system and make someone sick. While the vitamin A therapy is fairly simple, one should only do it under the supervision of a trained medical professional with an expertise in retinitis pigmentosa.

    If you think you have RP and have not been professionally diagnosed or you have the diagnosis but aren’t under the care of such an expert, I recommend contacting either Massachusetts Eye and Ear or the Wilmer Eye Institute at Johns Hopkins hospital in Baltimore for a referral to someone near you. Sorry, I really don’t know where to go outside the US and hope someone can add a comment providing advice for UK, EU and elsewhere.

    Proving that I collect completely useless facts: You should also avoid eating polar bear livers as they will likely cause you to have a vitamin A overdose.

    — cdh

  3. “Proving that I collect completely useless facts: You should also avoid eating polar bear livers as they will likely cause you to have a vitamin A overdose.”

    It is not a useless fact. It is, or was, according to legend, a very useful part of the instructions given to US airmen flying spy missions over the North Pole. And while you have no such ambitions at the moment, you never know.

  4. Maureen says:

    I have enjoyed your blog on RP. I would like to give a bit of input on a couple roads we have traveled. Maybe giving some caution also. RP’s progressive switch seemed to turn on a couple years back, before, we had only known of vitamins the opthamologist suggested. Then, found out about stem cell therapy in China, Costa Rica. Very costly. Found some herbal supplements, Prigmenton rounted through Pakistan, so we didn’t take those. Then we found out about acupuncture. We went that route, more affordable and felt it was worth a shot. Yu in Vancouver, Otte in WV, and Mumma in Dade City, by Tampa have been the ones we have used. All using different points. With Otte, he uses a Visual Field machine to track the progress or not… so we could see what was happening.

    Wanted to mention a couple articles I just found on cannabis, seems to help with night vision a great deal. Research can be found under Lots of footnotes to research… An interesting article by Sue Arnold, of The Observer, UK., wrote an interesting article, she has RP and how White Widow, a strain of cannabis, helped her regain some of her vision.

    Next, made a mistake and did Hyperbaric Chamber treatments. Wrong thing to do for RP! Next, began taking the suggested vitamin therapy by Berson, Vitamin A, PALMITATE, it is important that it is this form of vitamin A. Also, the alge form DHA, the mg. dosage is under question, I thought 600mg, but a couple reports I just read had it at 200mg a day. This is from a retinia specialist, Michael Tolentino, he did study under Berson, and was very proud that he aced Bersons final! Tolentino had informed me of the mistake with HBOT, I lost my notes to a computer virus, but I believe he said it caused photo oxidation to the retina. It was like a dagger to the heart, all those tiny steps with the acupuncture.

    We have also learned to eat organic as much as possible. Genisis 1:29, it’s all right under our noses… and stay away from GMO food, which is almost impossible. Learned which foods contain great stuff for the eye, put them in a smoothie and add peppermint, cilantro, 1/2 lime with the outter most green removed… those 3 will cover the taste just about anything, even 1/4 of a beet. I could go on and on… and breathing, oxygen, through Qigong.

    On my little desk is a bag of seeds to make a tea, just picked it up at the Asain store… for weak vision, night blindness, blood pressure control and eye diseases…. Cassia Tora Linn-contains persimmon leaf, lycii fructuce, chrysanthemum …. we’ll give it a whirl…can’t be any worse than what was in the Prigmeton: Nutmet, Spanish Chamomile, Egg shell calcium, Coral Calcium, Henbane, Indian Rennet, Cowhage, Wattle Bark, Cloves, African Rue, Elephant Creeper and Cinnabar

    Berson said 48 was the median age for loss of vision with RP. I’m hoping we get that close!

  5. Cheryl Byers says:

    Did the acupuncture ever work? I, too, spent 2 weeks with Dr. Otte. I am 75 years old with late-onset RP,which was misdiagnosed and undiagnosed for 15 years,despite consulting “specialists” and telling them the “classic” RP symptoms and family history. The younger people that were at the Otte clinic with me had excellent results, but my peripheral vision did not improve, although visual acuity improved greatly and now I can read for awhile without glasses. I think my age may work against me. Surgery in Bejing, ozone therapy in Cuba, Fensel lenses in Georgia. What do you know about any of them? If acupuncture helped at all, who was the practitioner?

    Cheryl in Arizona

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