Saturday, January 22, 2011

Living with retinitis pigmentosa and ADD

So, a few months ago I realized that not only do I have retinitis I also have ADD. No wonder life has been so hard. I do everything I can to think positive and to reframe my situation to find the opening, but sometimes, I just feel trapped and limited. I am 44 and I am finding it more difficult to drive, I am pretty much down to no driving at all after dark, and no long trips, but sometimes I even  feel like the short trips to the store and work and shuttling the kids are getting harder. I am not accepting that well. I am so determined to not give in to this disease, and I have done a lot to keep the vision I have.

At this moment I am studying Functional Medicine, and what I have learned, coupled with my knowldge of Grace Hollrahans work, has given me many tools to see if I can stop and reverse this visual loss. I have tons of information and knowledge that is not in the main stream. I believe this information may hold some hope for myself and othes. As for me, I want to kepp you posted on what I am doing and learning, and how its working for me. I hope if you relate to my struggle, you will contact me and share with me your experience as well, I hope we can support eachother!

Where have I been, and where am I going?

I have utilized acupuncture for 6 months consistently at two seperate times, as well as taken a fair amount of supplements and maintained a diet free of hydogenated oils and food additives, less white sugar than most, activity level was moderate to high, I used chinese herbs over extended periods. I never used western medicine even when others thought I should. I utilize homeopathic medicine through a great homeopath for years and years, and although I can't say be sure, I feel it helped me. I have done several detox programs, at different points over the years. And until now, I have been pretty sure my visual changes were minimal.

Ok, now what I am doing. Last year I felt it getting worse, plus I had a run in with the DL department that has plagued me and taken its own toll. OHHHH I still want to disbarre the Eye doctor who turned mein. Word to the wise, be careful, downright leary of all doctors!!! Anyway, I started to get serious about improving my vision so I saw an old school acupuncturist who gave me thick brown herbs he brewed in house.YUMMY! He was intense, it was not always easy, but i felt pretty good, I did improve slightly during that period! Then, I began to study Functional Medicine and I started taking Inflamx 360, from Metagenics, mycelized vit. A, vit C, Vit. E, selenium, liver support off and on, b complex from metagenics. And watching my blood sugar. I try to eat small meals with some protein every few hours.... But, I suck at it! I need to improve this, because, this very well may be one thing that makes the biggest difference FOR ME! I take Taurine and vit D and oh of course Fish oil, at times as much as 8,000 mg daily. I need to increase that again. I do not need zinc, and this has lead me to wonder if I may have some heavy metal toxicity? I have been using my microcurrent stimulator every night for about 5 or 6 months. I use eye patches and use it on three settings for 15 min. on each setting. I do not know if this is helping. Could doing it this easy way have negative effects?? I need to talk to the guys who use this treatment on the masses. I have gone off of wheat and dairy for periods of time, but am currently eating both. When I was wheat and dairy free, and taking Inflamx daily, plus tons of fish oil, I did feel these therapy's were helpful. I believe the antioxidants are slowly improving my skin, but not sure about my eyes.

Something seems worse lately. I am on the computer a lot. I am in Kentucky, bad air country? I use a blackberry too much... I am not on chinese herbs?

But why? Ok, so now I turn my attention to my brain, the ADD, could there be a link? Could I have neuro toxins? lack of neurotransmitters, or amino acid imbalance? Could I have metal toxicity? For me, this seems highly likely based on: I have a metal allergy and do not tolerate zinc supplementation. I have a metallic taste, which means I don't need zinc. Well, maybe I just don't need zinc, but something seems strange about that. Anyway, I have access to functional testing that will help me pinpoint neuro imbalances and nutritional breakdowns, as well as heavy metal toxicity. I want to do these tests and pinpoint my therapy.

Retinitis is an inherited disease of the mitochondria of the cells of the retina. It is a mutation in the cell dna which increases the ROS (reactive oxygen species) or free radicals thus the need for antioxidant supplementation. Antioxidants help neutralize free radicals. when you have too many ROS and not enough antioxidants, you wind up with and increase in inflammation. (notice the itis in retinitis, itis is medical for inflammation).

Yesterday I started drinking organo gold infused with ganoderma, who knows? I do like coffee, so what the hey... Just stay away from the Latte type, too many bad ingredients, especially for RP.

I will continue to blog about RP and ADD as I find answers or just thoughts I will share. 

organo gold ingredients unhealthy

As an Nutritionist, I am so sorry to see this "healthy" coffee using unhealthy ingredients in the latte and mocha. One of the ingredients is sodium aluminum sulfate. This ingredient is called a mutagen, meaning it snips and mutates the DNA in the mitochondria of the cell. This is the same result that ganoderma is proported to counteract with it's antioxidant properties. Further more mono and digycerides are fatty acids that on a cellular level get imbeddeded into the cell membrane causing a variety of health concerns including interference with estrogen receptors and increased risk of diabetes. These are one of the most unhealthy additives available.