Comments About Retinitis Pigmentosa
Hi, I noticed using the search feature there are no posts yet on earthclinic for retinitis pigmentosa, a progressive and usually genetically caused eye disease that leads to tunnel vision, night and color blindness, and blindness. It affects about 1 in 4,000 people in the US. There is currently no effective treatment in mainstream medicine although some studies indicate the progression is delayed by vitamin A (Retinyl palmitate), lutein, and N-acetylcysteine. Vitamin E was found to be detrimental.
I am looking for thoughts on other nutritional supplements that could delay the progression of retinitis pigmentosa. I am thinking that astaxanthin, zeaxanthin, meso-zeaxanthin and C3G (Cyanidin-3-glucoside), alpha lipoic acid, and coenzyme Q10 would also be helpful. Any foods or supplements to avoid would also be useful. Would EDTA chelation be potentially useful? It seems to me like the disease could be affected by blood circulation to the retina.
Promising advances are being made in stem cell therapy and electronic sensors implanted in the eye. Being able to delay the progression by a few years could be all that is needed until these or other technologies are mature. Thanks for any help.
Tampa, Florida
08/17/2011
Hi, have enjoyed reading many new remedies! Wanted to add a bit of feedback on RP... Elliot Berson M.D. in Boston... recommends DHA 600mg and 15,000 of the Vit A Palmitate. Make sure and have your liver functions checked. No EPA, use plant base product for the DHA. Colson co., I believe was recommended by FFB.org.
Other "out-there" things to maybe try. Do your research... Acupuncture, there are quite a few out there that have honed in on something- Wei Dong Yu in Canada, Per Otte in WV found 6-7 points on the bottom of the feet and 3 on palms, he's taught a few this technique as well as his partner- Dalghren who has retired in Copenhagen. Otte taught Rosnefarb in NJ, Gail in Ca. Another lady in Az... Pran Mumma outside of Tampa Fl, learned from Dalghren, but he changed techniques, to meridian line on forhead and ears... Learn Qigong for better breathing. Do NOT do HBOT, hyperbaric Chamber, wrong wrong wrong for RP! Check out Jeff Primack book on Whole Food blending: Conquering Any Disease, for the eyes his protocal is a blend of orange bell peppers (super high in Zeaxanthin), yellow corn (2 ears) spinach(1c), Kale (4 leaves) and goji berry(1/4c). Also in your smoothie add Basil (handfull), ginger (1/4" slice), cilantro (3 nodes) and peppermint(handful). Also, blueberries (1/2c), almonds (10), (use hemp oil or olive on salad-- for the carotenoids to absorb better). A few other special ingredients he recommends to throw in the smoothie -- Maca root(1t), camu berry powder(1t), raw chocolate beans(4-6), black sesame seeds(2T), ginseng extract (1vial), royal jelly freeze dried powder, kang yan cordyceps (never got this) and (shitake & maitake mushrooms cooked in meals). Not on this page for eyesight improvement is the lime, (but Jeff said to put in each smoothie, will cut even the taste of 1/4 slice of beet! ) peel just the very outter green, leave the white and use 1/3 to 1/2 of the lime and a fuji apple, seeds and all in the smoothie. It's not a Dairy Queen shake, this is for healing.
I put in () for the amounts I usually used... and of course Organic as much as possible.
Always check out Craigslist under Farm and Garden, and google Food co-ops... There are ways to find organic! Remember, these are fresh, not cooked, and blended, not juiced. Vitamix or Blendtec type blenders for the best sucess.
Blessings to all and good luck. Their has got to be a way to make those rods and cones regrow/re-activiate!
Maureen in Florida :)
Concord, Nh
09/05/2011
Maureen, thanks for the great reply! Lots of good stuff to investigate. If you are able, could you explain why hyperbaric therapy is counterproductive? The advertisements from several clinics say it works for RP. It would be nice to avoid pitfalls like that.
By the way, last week a new study came out showing that the birth control pill norgestrel helped RP rats, published in the September 2011 Journal of Neurochemistry. The drug seems to work by stimulating the production of a protein survival factor called FGF from neighbouring cells in the eye and this helps the light-detecting cells to survive.
Norgestrel is often referred to as the "mini-pill" because it does not contain any estrogen. Norgestrel (a form of progestin) is a hormone that prevents pregnancy by changing the womb and cervical mucus to make it more difficult for an egg to meet sperm (fertilization) or for the fertilized egg to attach to the wall of the womb (implantation).
I am considering at the risks versus rewards of trying Norgestrel for RP, shown to work on rats but not yet humans. The drug should be relatively inexpensive and available. I think this would be an easy decision for a female with RP, but what would the side effects of norgestrel be like for a male?
Brisbane, Queensland, Australia
09/06/2011
Denmark
03/23/2014
My name is John Boel Jr. I am an acupuncturist from Denmark. In our clinic, Boel Acupuncture, we have been treating Retinitis Pigmentosa since 1987. Today we use an acupuncture system called AcuNova. It has proven to work the best. Unfortunately we can not help everybody with Retinitis Pigmentosa but most can get their eyesight improved. It is not a cure but can improve eyesight and then keep it at that level. Below you can see a 2:30 min video of a patient who got his eyesight improved from 16% till 32% vision. http://www.youtube.com/watch?v=RwIfpFEC09c
