Most Recent Hyperbarics Study

Below is the most recent hyperbarics study. It is unique in that it documents the long term effects of undergoing hyperbarics and its effects on RP.

http://www.ncbi.nlm.nih.gov/pubmed/17674017?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Cyclosporine and RP

I was emailing a Hungarian RPer today. Anyway, I remembered reading about a research study using cyclosporine for RP being conducted at Semmelweis, which is in Hungary. I relayed the info and then was bit by my terminal case of "curiosity killed the cat".

So, I started googling cyclosporine, retinal degeneration and did a patent search. Looks like Dr. Gholam Peyman, LASIKS patent holder, former professor and all around ophthalmology super star, holds a patent on using cyclosporine delivered via IOC for RP.

IOC is lingo for "needle in the eye". I can see why they use the term "IOC". Can you imagine sitting down with your RS and hearing, "We will be delivering this medication via our cutting edge 'needle in the eye' technique." And for the record, a needle in the eye does hurt.

The Hungarian study uses drops instead of IOC. There is some resistance to the idea that a drop can make it to the retina. Anyway, something interesting for the hobbyist. None of the journals offer that box to check on your subscription form. :) Guess I cannot make fun of my husband for playing video games with a hobby like "reading medical journals when I do not have to...."

http://www.patentstorm.us/patents/7083802-claims.html

My Vision Now

My vision nine months post placental implant shows very little change since before the implant. In fact, the visual acuity in my left eye, per the Snellen test, is a line worse. This is not considered "significant" in clinical land. It could have been a bad day. It could have been a good one.

As for subjective improvements? Things have remained very "dirty tunnel" and in major need of some heavy duty cleaning! It was pretty amazing being out of the tunnel for a short time last summer. And the night vision thing?! I felt like a super hero! Of course, my husband was quick to tell me that having normal night vision is a pretty lame super power.

Does this depress me? Well, if I did not believe this was part of a plan for my life, the answer would be "Ummm......of course!" But, I do believe in a Creator and a plan. So, I find it more frustrating than depressing. Annoying...Extremely annoying! That is human nature, I guess. I could focus on being grateful for the vision I DO have as opposed to focusing on what is lacking...Gosh, the horrid puns just keep coming. Guess I need to pray on it.....the gratitude part, not the puns. Or possibly the puns too....:)

Dorzolamide- RP and CME

Another drug possibility for RP and CME:

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17215269&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Check out the FFB's website for the latest on nutritional interventions beyond Vitamin A Palmitate. I also found the information about the Harvard study showing that eating processed baked goods speeds the progression of AMD interesting. The late Grace Halloran, RPer. author of Amazing Grace and creator of her own vision care program, made these assertions over a decade ago. I wish I had been more consistent in following her protocol. She was decades ahead of her time. Live and learn...

More on an RD disease responding to glaucoma drug

From the FFB's website:

http://www.blindness.org/research.asp?id=287

Another acetazolamide study- RP no CME

The authors of this study maintain the improvement seen in their subjects was independent of the resolution of CME in RP. This jives with what the authors of the case study hypothesized in their conclusion. In other words, the improvement in visual function is not just due to controlling the cystoid macular edema, rather there is a possible metabolic change or other explanation.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=8319913&ordinalpos=14&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Possible Explanation for Acetazolamide Effect

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15295099&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

10 Year RP Hyperbaric Study

Below is a link to a study which followed people with RP for ten years who underwent hyperbaric therapy. Their conclusions are encouraging. It may provide a means of stabilizing vision loss. Now, the financial and practical realities are another issue.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17674017&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

FDA-Approved Trials Recruiting

An email from a physician reminded me of the importance of emphasizing mulitple opportunities. Most of the FDA-approved trials cost next to nothing. Some will even reimburse patients for time and travel.

http://clinicaltrials.gov/ct2/results?term=retinitis+pigmentosa

Hyperbarics Mobilizes Stem Cells

Attached is an article about hyperbarics and the mobilization of adult bone marrow-derived stem cells.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16299259&ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Parents claim Child is Regaining Sight

Another case of a child with optic nerve hypoplasia whose parents claim he is regaining sight. His website mentions his famiy is raising funds for a year's worth of hyperbaric therapy following treatment. He has been advised to seek hyperbaric therapy five days a week for a year.

http://www.sun-herald.com/Newsstory.cfm?pubdate=092507&story=tp6ch11.htm&folder=NewsArchive2

http://www.cameronsmiracleofsight.com/web/do/site/home?ID=248540

More Rats Regaining Vision

http://news.bbc.co.uk/2/hi/health/6120664.stm

More on Mexican Stem Cell Clinics

An emailer sent me some information about a stem cell clinic run by Dr. Ramirez del Rio in Tijuana, Mexico. From what I have been able to gather, both Dr. Ramirez and Dr. Morales are associated with the Steenblock Institute in California. I found two newspaper articles regarding this clinic as well. The reporters did a good job of representing multiple perspectives on off shore stem cell clinics in addition to sharing the testimonial of a family whose son with CP gained sight. Once again, these doctors, like the ones in the article about the Chinese clinic, claim to be using stem cells derived from umbilical cords. Of course, the Chinese claimed to use approximately 40 million cells in treating the child with optic nerve hypoplasia. From what I have read regarding the doctors associated with Steenblock, each injection is approximately 3 million cells.

This is interesting in light of US mainstream research done in rats which shows the superiority of umbilical cord stem cells in RP. Keep in mind the manner in which the cells are isolated and processed is critical as is the delivery.

As mentioned previously, Dr. Ramirez is associated with the Steenblock Research Institute. I scoured PubMed for papers published by this institute and found one. I found another co-authored by Dr. Morales. However, niether was from a peer-reviewed journal. I have noticed the doctors have decided to sell a book with their results. The problem is their results have not withstood a critical review.

Of course, there is a definite "in club" in academia, not so different from junior high. Like junior high, it helps to have a pedigree and money.

So, for argument's sake, what if you do happen upon something revolutionary and are not in the "in club"? In fact, if you are doing revolutionary work in humans, you are pretty much a pariah. What do you do?

It would be nice if the clinic had cooperated with the reporter's offer to test the cells. It would be nice if they had evidence of trying to work with the FDA, regardless of how difficult that may be for a group of outsiders. However, I also have to disagree with the comment made by one academic that a truly efficacious treatment will receive speedy approval by the FDA. That is simply just not true of a non-pharmaceutical therapy. Maybe that statement could apply to an off-label use of an existing drug.

I also disagree with the argument that if these treatments are legitimate then drug companies would be interested. Where is the profit potential for a pharmaceutical company in stem cells which are created by nature? There has to be something to manipulate and patent. In fact, if I were an influential player in a pharmaceutical company, I would be threatened by stem cell therapies. I would want to stall progress as long as possible in order to preserve my future market share for drug therapies, which requires gazilions in R and D funding. Maybe I would even actively support political factions which fuel ignorance by lumping adult, placental and umbilical cord stem cell research in with fetuses and embryos. Maybe I would do these things if the sole measure of my success as a human being was based on next quarter's EPS.

There is profit potential for the labs that process the cells as well as storage facilities. However, an IV can be placed by a nurse. If it does not involve complicated surgery, justifying over a decade of education, where is the incentive?

Jim Rogers, one of my favorite authors and a brilliant financier, asserts that in order to understand the vast majority of human history one must "follow the money trail." Systems and institutions have a vested interest in perpetuating themselves. People promote those who think like them. Therefore, change in establishments occurs very slowly.

So, what do I do as a patient who has a degenerative conditon and would like to enhance her quality of life? Pray....

http://www.signonsandiego.com/news/health/20050613-9999-1n13stems.html

http://www.cerebral-palsy-web.org/news/news-0023.htm

http://www.ramirezdelrio.com/

http://www.stemcelltherapies.org/

http://www.palmbeachpost.com/health/content/local_news/epaper/2005/06/19/m1a_stemcell_0619.html

Child Sees for the First Time

An email friend sent an interesting article which referenced this child. Attached is information about a little girl who was diagnosed by numerous ophthalmologists with optic nerve hypoplasia. She experienced sight for the first time after traveling to China for a stem cell transplant. The source of the cells? Umbilical cords...

http://www.stillwater-newspress.com/science/cnhinsscience_story_247171700.html

I also received some information about a stem cell clinic in Buenos Aires which provides stem cells derived from one's own bone marrow. The reader told me of a friend with vision-related complications from MS who experienced noticeable gains, both visual and physical, which remained a year after receiving the cells.

http://www.fundacionfernandezvina.org/noticias_mostrar.php?accion=vercompleto&id=15

Also, I learned the procedure performed by Dr. Gonzalez has changed since I received the implant. More placental tissue is being implanted in more areas of the body. I do not have any further information than what is available on Dr. Sapse's website.
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Glaucoma Drugs

I can be dense, but I have learned a few lessons in this life. One is the saying, "Where there is smoke, there is fire" is generally true.

The acetazolamide case study discusses a drug which was effective in RP with CME and traditionally used to treat glaucoma. I remembered the drug Dr. Nolan is using to treat retinal disease is also one which was used in the past to treat glaucoma.

I was curious to see if acetazolamide and the echothiophate, used by Dr. Nolan, were in the same category. I have read the drops used by Dr. Nolan are no longer manufactured. It would be beneficial if there was another drug which worked equally as well that is available.

Below is a link to an article on drugs used for glaucoma.

http://www.eyesurgeryeducation.com/Glaucoma_prescribed.html


The acetazolamide case study I link to discusses the positive results of a patient with macular edema and RP who used acetazolamide long term. Below is another study which was larger, double blind and focused on people with RP who did not have macular edema.

However, it was limited to eight weeks. The case study highlighted a patient treated for twenty four weeks, The dosing in the double blind study was also limited to 500 mg/ day. The patient in the case study who had impressive gains was taking 1000 mg/day. The results are not nearly as encouraging in the eight week study in which the patients only took 500 mg/ daily. However, for the three people who made "significant peripheral field" gains it does not matter.

I think three out of 13 people experiencing "significant gains in peripheral field" while none of the placebo group experienced gains IS worthy of further investigation, particularly in light of the success of the twenty four week case study.

The shorter term success of the three patients in the eight week double blind brings up some interesting questions: Were they all at a cetain level of degeneration? What other systemic issues did they have in common? Were there any similarities in lifestyle choices? Did they all have the same type of RP? Were they of the same gender? Now that Dr. Stone at the University of Iowa has a genetic testing lab, it would be interesting to see if these three individuals had the same genetic mutation.

The conclusion portion of this article the authors state: Given the results and the reports of side-effects, it is difficult to justify using acetazolamide to improve retinal function in RP patients who show no evidence of cystoid macular edema.

How can you make this conclusion when you did not follow the full protocol established in the case study? How about presenting information to patients along with full disclosure and let us decide? Retinal specialists did that with potentially toxic levels of Vitamin A Palmitate which never showed an increase in anyone's peripheral fields, only a slowing of the disease sometimes.

I also shudder to think the authors of the double blind were actually trying to replicate the excellent work done in the case study. Maybe they were unaware of the case study and did not do a thorough review of research prior to starting their study. Why do I criticize so harshly?

Because practicing physicians only have time to read abstracts, if that. Many people in the research community only read abstracts. We are talking about people's vision, not just lab rats. If the pressure to publish leads you to do less than your best, then go research something else, like the mating habits of the duck-billed platypus. I am sure there is funding for that.

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