Thursday, June 11, 2009

Retinitis Pigmentosa, Cuba, Ozone and " Treatments"

Most people who have, or know someone with RP have heard of the cuban treatment, Cuba of course claims that it has a huge success with their treatment, it has been hard to document this since our Doctors can't go over there and study it. Of course take into consideration that Cuba needs money badly, so they have a reason to " hype " their treatment ( even more than our own greedy unethical doctors here ) but I have seen some questions lately on the subject so for what it is worth, here are some links,
generally the full cost of treatment, if you can get permission to go over, is around 11,000.

this site is from a local man who was trying to go there and get treatment, but if you notice, doesn't seem to have been anything posted for a few years

( supposed report smuggled out from a doctor? )

and wikipedia is always a good place for some quick info
and pubmed had article where doctors studied the people who came back from cuba///////////
Berman-Gund Laboratory, Harvard Medical School, Massachusetts Eye and Ear Infirmary, Boston, USA.
OBJECTIVE: To evaluate the effect of intervention with electric stimulation, autotransfused ozonated blood, and ocular surgery, performed in Cuba, on the cou
rse of the common forms of retinitis pigmentosa. DESIGN: Ocular evaluations over 6 to 8 months before and after intervention in Cuba. SETTING: Evaluations performed at a US clinical research facility. PATIENTS: Ten adult patients aged 25 to 67 years with retinitis pigmentosa. MAIN OUTCOME MEASURES: Visual acuity, visual field area, and electroretinogram (ERG) amplitude. RESULTS: No significant change in visual acuity or visual field area was observed on average between preintervention and postintervention values over a 6- to 8-month interval. Mean 30-Hz cone ERG amplitude declined by 15.5% between preintervention and postintervention values (P = .006). When data on change in visual field area from 1 statistically significant outlier were excluded from the analysis, a significant decline of 12.9% in mean visual field area was observed (P = .025). CONCLUSIONS: These data support the conclusion that the intervention offered in Cuba provides no benefit to patients with retinitis pigmentosa as measured by visual acuity, visual field area, and ERG. The magnitudes of the mean declines observed in ERG amplitude and visual field area over a 6- to 8-month interval, relative to those reported in previous studies, raise the possibility that this intervention may worsen the course of the disease.
PMID: 8619765 [PubMed - indexed for MEDLINE]

Ozone therapy is another " option " talked about for RP, as with everything else remember, according to those in the know, there is no true cure of RP
When I first heard about the ozone treatment for RP there was a doctor performing it down in Atlanta, now it seems there are generators you can buy and do it at home, there is a " spa " in texas. I would say proceed cautiously as ozone can have some bad effects on you also if not done right, and evidently some good effects for everything from your eyes, to skin, to detoxing your system etc.
There is also the stem cell research, a Dr Radtke out of Louisville was doing some trials on that, I don't know if he still is, he has a website, also a very good retinal specialist.
Gene Therapy is the new and maybe promising research for RP, I will try to look up a little more on this later, see if there are any trials going on etc, for now there is this
LCA2 (retinitis pigmentosa) is a disease in which the photoreceptor cells of human body fails to respond to light. This is due to a gene called RPE65 which fails to produce a protein that have an importance in healthy vision.
In the study, researchers used an adeno-associated virus, a harmless virus which already exists in most of the people, to deliver RPE65 to a small area of the retina which ultimately helped in the formation of the protein that helps in healthy vision.
This study is a milestone, as this new treatment will be effective in treating human vision disease which are inherited in families and results from mutations in single genes, says Barry J. Byrne, M.D., Ph.D., a professor of molecular genetics and microbiology and director of UF's Powell Gene Therapy Center,

Vitamin therapy,,, Through the years everything from lutein to mega dose vit C has been said to " slow " the progress,, I don't think there is any real proof of this, watch out for the " mega " dose suggestions, my mother had a bad reaction to , I think , C,,, so you can take too much.

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