Yet another hyperbarics case study

Yet another hyperbarics case study showing an increase in visual field. I think the patient in the German case study is going to have the best long term result because he continues to go five times per month after the initial intensive treatment phase.

http://www.ncbi.nlm.nih.gov/sites/entrez

I really would have appreciated knowing about this ten years ago. It is interesting how the minds of researchers work. Nothing is of particular interest unless it is large scale, uses the most objective testing method was conducted during a full moon and so on and so forth...Well, I added the last one, but you get my drift. .It is even more noteworthy how s-l-o-w the process is to move a treatment from the lab to clinical practice.

I feel it is up to me to fend for myself. I am blessed to be able to do so. I think patients are entitled to any information which may prove remotely promising. Particularly something like hyperbarics that is relatively low risk and currently available. People should be able to weigh the risks and proceed or not, their choice. But, if there is a treatment that has helped and is not widely available or known about because no one has bothered to fund a large scale trial....and patients are not aware it is out there....well, that is just not acceptable.

Alternative Explanation-Diamox

Below is a link to a research article from South Africa. To put it in context, I will give a little background on acetazolamide (Diamox) and RP....

1) Your RS will view this from a "majority of the evidence" perspective. This is the difference between being a doctor and a patient. S/he will tell you acetazolamide was used to treat CME associated with RP. They will tell you this is the reason why visual acuity improves in those with RP and CME who use Diamox (generic name acetazolamide).

2) There have been studies that have shown acetazolamide improves visual function in those who have RP but no CME. See the following link for more info:

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=8425835&dopt=AbstractPlus

Okay, so what gives? If the standard line of thinking among the RS community is correct, and acetazolamide only works because it helps the CME (and is replaced by other drugs now) , then WHY is it helping people with RP who do not even have CME?

That means either:

a) The researchers who reported the visual measures improved in people with RP and no CME while on acetazolamide were not telling the truth OR

b) The "significant peripheral field gains" in 3 out of 13 no CME/ RP patients was due to some testing flaw not experienced by the controls OR

c) Our three out of thirteen visual field testing rock stars were all just having a bang up day OR

d) There is another factor influencing the improvement in visual field gains in the RP no CME folks.

So since I come from the "weigh the risks and give it a whirl" versus a "preponderance of the evidence" school of thought, I decided to keep digging. The link below offers an alternative explanation for the effectiveness of acetazolamide in treating RP.

http://www.ncbi.nlm.nih.gov/pubmed/15295099?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

A possible explanation from a genetic perspective:

http://www.ncbi.nlm.nih.gov/pubmed/17652713?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

The authors of this case study also make a case for an alternative explanation and increased potential of this drug in RP:

ARTICLES AND REPORTSLong-term effect of acetazolamide in a patient with retinitis pigmentosaJC Chen, FW Fitzke and AC Bird Department of Clinical Ophthalmology, University of London, England.The authors studied the therapeutic effect of acetazolamide on a patient with autosomal dominant retinitis pigmentosa complicated by retinal edema. In addition to reduction of macular edema and some improvement of central vision, they found an unexpected progressive increase in extrafoveal retinal sensitivity with prolonged medication. It is proposed that the therapeutic effect is mediated by alteration of retinal pigment epithelial function and that disturbed polarity is restored to a more normal state. 12

So what if our "preponderance of the evidence" thinkers are wrong? What if the British case study explanation above can be further supported by the technical details in the South African article? WHAT IF THEY ARE RIGHT? And I am sitting here not at least trying a drug available on every corner within a five mile radius of my house? The acetazolamide, not the other one commonly used for glaucoma by old ladies in garden clubs. :)

I guess this drug is very difficult to take. Well, I know people with glaucoma who have been on it for decades and are happy to have vision. Everyone's body is different. There is no way to know how it will affect a person until they try it. It is not like it is an opiate.

The problem is there is no creativity in medicine because everyone gets sued. A lot. Sigh....

Japanese Hyperbarics Abstract

I have linked to quite a few hyperbaric studies. After reading through the research, I have come to my own conclusion. It seems as if hyperbarics must be continued in order to maintain the same level of visual improvements it provides. However, it does not seem to need to be at the same intensity.

The German case study seems to be the most easy to replicate. The patients in the Italian study went every day for two years. This would not be practical for most people. However, the German case study in which the patient started with an intense schedule for four months, tapering off to five treatments per month thereafter, seems more practical. He is maintaining his improvements.

So, it is my belief that in order to keep the gains one must continue HBOT to some degree. It is encouraging to know the patient in the case study is able to maintain his visual gains by going five consecutive times per month.

It is important to use a "hard chamber" with hospital grade oxygen. It is also critical to note how many atmospheres of oxygen are being used and for how long.

Mechanism of action? Hmm...Well, the simple answer would be that it saturates the blood with oxygen thus providing more nourishment to the ailing retinal cells. However, hyperbarics constricts vessels. So, either the hyperoxygenation of the blood is so beneficial that it more than compensates for the constricted vasculature OR there are additional/ other factors at play.

One of the articles I link to discusses how exposure to hyperbarics increases the number or circulating stem cells in situ. Our body has its own stem cells which cruise around and do their work. One of the articles discusses how exposure to hyperbarics increases the number of these stem cells significantly. So, this also could be a factor in its effects as well as the fact that, even ten years later if you believe the Italian study, the hyperbaric group maintained more vision than the controls.

There is also a nitric oxide component which is interesting. I know, I need a new hobby. Wine tasting is the only one on the radar and it seems like a slippery slope in to overindulgence! I mean, whomever decided that a red wine glass should be the size of a small globe?! :)

More RP Stem Cell Research- India

http://www.sciam.com/article.cfm?id=stem-cell-eye-repair

Hyperbarics Protocol

Below is some information on a relatively practical HBO therapy protocol.

http://archive.rubicon-foundation.org/1635