July 31, 2008 — -- What would you do if had an incurable disease and heard that something simple and common may help -- a chemical found at a pet store, or in an allergy drug, or a breakthrough injection a man in California developed?
It's the sort of dilemma Alan Romantowski, a former airline pilot, faces with each news story about Alzheimer's disease treatments.
"It is tempting; I'm taking ginseng, fish oil, ginkgo and all the over-the-counter things that the doctors say don't have any proof that it helps, but it doesn't hurt," said Romantowski, 55, who is suffering from the early stages of the disease.
And not all of the solutions Romantowski has sought have been from a pharmacy. Earlier this week, he says, he "was just about packing my bags to California" to try an unproven treatment that involved injections into his head -- that is, until his doctor let him know that the so-called breakthrough treatment he heard about in California was "wacky" and unproven.
But whether scientifically sound or wacky, any news about potential Alzheimer's treatments can fill a doctor's voicemail with calls from desperate families.
And a new potential treatment announced Tuesday may be no exception. Discussed at the annual Alzheimer's Association Meeting in Chicago, a drug called Rember sparked hope among researchers and within the Alzheimer community.
Rember has completed a phase II trial, which means it's a long way off from meeting FDA approval as a legal therapy. But, thus far the data has shown promise -- double the improvement in cognition than a placebo gives for patients with moderate Alzheimer's disease.
And the drug happens to have an active compound called methylene blue, which is found in medical and industrial dyes and in some pet shop fish medicine.
"I think there was an article about that in our paper this morning," said Josie Romantowski. "I actually even called my husband about it... as far as trying [a drug], what is there to lose really, at this point?"
Not, however, if it's in the form of blue jean dye or fish medicine, her husband said.
"You try to want to balance between being optimistic and aggressive, and not going into things that are just quackery," he said. "I would certainly discuss it with the neurologists, and if they thought it would be safe and wouldn't be a problem, I'd try anything."
Researchers found the effect of Rember by accident in 1986, when the active chemical in a test tube dissolved substances found in the brain which are thought to be involved in the development of Alzheimer's called "tangle filaments," said Claude M. Wischik, professor in mental health at the University of Aberdeen, U.K. and lead investigator of the Rember trial.
Over the years, there have been many uses found for this compound in medicine, from biological dyes to a treatment for cyanide poisoning."From a surgeon's standpoint, the main thing we use methylene blue for is we inject it into the patient's veins and it turns their urine blue -- that's so we can find leaks," said Dr. Chris Gonzalez, an associate professor of urology at Northwestern University in Evanston, Ill.
Gonzalez says an injection of methylene blue might also be used to treat the potentially lethal condition of methemoglobin, where a person cannot get enough oxygen from their blood and turns a slate-blue color. Or, it can also be injected to treat priapism -- "when you get an erection that won't go away," said Gonzalez.
But at the first news of methylene blue's ability to dissolve tangle filaments, "the world responded, 'yeah, so what?'" Wischik told ABCnews.com. The tangle filaments methylene blue dissolved in the test tube were known to be a hallmark of Alzheimer's in the brain. But at the time, Wischik says, the latest theories about Alzheimer's thought of tangles as a consequence of the Alzheimer's, not as a cause of dementia.
"In the end I decided the only way to win was to win -- to have a clinical trial that proves the point," said Wischik. "I had to form a company to do that."
So now that Rember is in clinical trials, all that Wischik and families like the Romantowski family can do is wait and hope for the scientific research to prove it's a useful drug. This wait is nothing new to the Alzheimer community.
Dr. Ronald Petersen, chair of the medical scientific advisory council of the Alzheimer's Association said Tuesday's glowing coverage of Rember already reached his patients and their families.
"As a result I've already had several calls from my office saying 'Is this available, can I get this for my mom and dad?'" said Petersen. "Some people are desperate out there.
"It's a fine line -- trying to give people the idea that there's hope out there in the field, because there really is, but also tempering the news based on the information."
"We've read so many reports of things that were so promising, and then we go and talk to the neurologist," said Romantowski. "In the final analysis, so far always they don't hold up to the original hype that comes out."
"But there are so many of these studies, that somebody has got to hit on one of these," he said.