I was contacted last week by a woman who's mother is suffering from macular degeneration. She wrote, because she had seen my article about the Mexican "stem cell" clinic in Algodones Mexico. In 2005, my wife of 20 years was dying of cancer. In desperation, she decided to go this clinic and I decided to go along to see how this operated. The story of that trip is elsewhere here on this blog (see one of the first posts). The woman was wondering if there was anything she could do to stop her mother from being defrauded out of her money. Her mother is not rich, and apparently can't even pay for the out of pocket expenses for medical treatment beyond what her insurance will pay. So this supposed "treatment" will drain away even more of her limited funds.
In 2005, the clinic charged my wife about $15k for shots of what was supposed to be human embryonic stems cells. The treatment was theoretically going to inject stem cells into her cancer site and the cells would miraculously convert the cancerous cells into healthy cells. The clinic has since apparently lowered it's prices to $2000 an injection. However, as I remember, the original 'bait' was that the injection of lamb's stem cells was what was offered for $2k, and that if you wanted the more 'effective' human embryo stem cells, that was much much higher. We were told that the ability to procure human stem cells was much more difficult, and expensive.
This is the classic 'bait and switch' routine employed by salesmen everywhere. Get you in the door with a low entry price, and convince you that you need to spend more. The shot this clinic gives, is very likely to be nothing more than steroids, since the reaction for my wife, who had not been on steroids (though her doctor was urging her to), was so immediate and dramatic,and wore off so quickly, that it seemed very odd. By the time we were driving home the next day, her pain was back at full strength. In talking with medical professionals after this trip, they all agreed that it sounded very much like the reactions that people suffering from cancer have after taking steroids. To be clear,my wife died in September 2005 after receiving no benefits from taking these shots. Her uncle, and his brother, both suffering from other illnesses, also died within months of the treatment. They too, like my wife, experienced an overnight 'high' of pain relief that quickly wore off. Again, the kind of relief that steroids achieve by reducing swelling around infection sites, or so I'm told by doctors.
Hope springs eternal from those with diseases that have no cure, and in one way that's good. However, it lowers resistance to believing that people can be bad to good people. It is natural to want to feel that there is some magic potion out there that will cure your ills, and that "big pharma" or some other big government and big business wants to hide this treatment from you.
I reminded the woman to tell her mother that this border town of Algodones Mexico is along a border that is controlled by Mexican gangs in one of the most out of control situations on the planet.Many Mexican border towns are already "failed states". Why would Algodones, where the profits from the clinics and pharmacies hawking inexpensive drugs that are claimed to be identical to the ones we buy here at such high prices, why would this town be exempt from the rampant extortion of the drug gangs? The answer is likely that Algodones is a cash cow. That the drug gangs could already run the city, for their profit. It's so easy to take desperate Americans who have cash in hand, and milk them for their money. Why kill the golden goose by having a gang war over the profits?
A friend who is a local doctor on the State medical board, told me that they often run tests on foreign drugs. He said that in his experience most Mexican bought drugs from towns like this are frauds. Either outright or that the content of the medication is substantially lower than expected. These are not 'our' drugs being sold in Mexico. They are clones, which are very hard to detect, as they look like the real thing.
To be clear, I am not an apologist for our medical system. While I know very dedicated and competent medical people, our system is driven by profit. We have handed our medical treatment over to corporations who will pay their executives millions of dollars from their corporate profits. Yet we expect that we will have better care for all people than a system that takes the profits out. Wishful thinking at best. This is not theory. The proof is in the reality that many countries that we compete against in the world market, have government run medical systems that are giving better care than we do at much lower costs. Canada, Japan, England, Taiwan, Germany, and more all do a better, lower cost job than we do. To call my $800 a month medical insurance payments anything other than a tax is absurd. The argument that we will have 'death boards' under a government run system is also disingenuous. We already have death boards, and they are run by your insurance company, behind closed doors. The bureaucrats running our medical insurance companies routinely decide who gets treatment and who doesn't. Who dies and who doesn't. In a government run system we would at least be able to ask for transparency, and accountability.
Ultimately, I told the woman that if her mother was convinced that this miracle cure was going to work, had the money, and was of 'sound mind and body', there really was nothing that anyone could do to stop her. It's heartbreaking, but people with a belief, however irrational, will stop at nothing to follow it.
Tuesday, July 3, 2012
Sunday, August 14, 2011
Cancer reporting in the NY Times
The New York Times magazine today had an article by Mireille Silcoff, on Kris Carr, called "Every Cancer Has A Silver Lining". I had been unaware of Ms. Carr's celebrity, since I don't follow Oprah.
I was truly shocked by both the title and the writing of this story, giving very little credence to anything but the 'power of positive thinking' that Ms. Carr represents. It is the kind of superficial article I would expect from Time or People Magazine.
I spent five years caring for my wife, a terminally ill bone cancer patient. She did ultimately die at home from her disease. During that time she was desperate to find a cure. She, like Ms. Carr, was uniformly positive in her thinking, right up to near her death. At that time, she became very despondent about her inability to cure herself. I would bet that this is not unusual, and that if Ms. Silcoff interviewed some hospice workers, and asked them what they thought of Ms. Carr's ideas, that she may have got a balanced view that would have given a different slant on this article.
Apparently Ms. Carr, who was lucky enough to be diagnosed with a slow developing fatal cancer, has become a celebrity by embracing her cancer, and laying claim to the marketing buzz of "Crazy Sexy Cancer Survivor." While there is a part of this that is wonderful, in that taking charge of your cancer and being bold about declaring your willingness to stand up and be counted rather than live in fear, is a good thing, it ignores some ugly obvious truths and conclusions. The first is that there is no truth to the notion that, "Every Cancer Has A Silver Lining". I assume that Ms. Silcoff had some input into the title of such an important story. How many of you know people who had cancers without a silver lining, people who died in horrible pain, suffering and the draining of their personal resources. Ms. Carr's cancer could have gone two ways, one, killing her before she could decide to be "crazy and sexy" or one that might have stretched out for many years, as she has. Ms. Silcoff might have also mentioned that a similar situation exists for Hepatitis C and other cancer sufferers. Some die quite quickly, some can tolerate their disease for decades without significant symptoms. Any oncologist that Ms. Silcoff could have talked to could have confirmed that.
Certainly, there are some lessons that many people learn from cancer, but I would bet that there are many who don't see anything positive in dying in pain. My wife certainly didn't. Some interviews with people who didn't see anything positive about it might have given some balance to this article.
Ms. Silcoff covers Ms. Carr from the point of her celebrity. There is no questioning in the early part of the article, where it is most likely to get read, about Ms. Carr's background in all this. The reader gets to understand that Ms. Carr has the curriculum vitae's to talk about cancer as a survivor, as she has lived since her 2003 diagnosis of her rare cancer without dying from it. Fine. However, the article gives much credence to her celebrity as a cancer survivor, and her 'think positive' message. This message includes support for many products that we are not clearly able to discern whether Ms. Carr is profiting from them or not.
While Ms. Silcoff quotes Ms. Carr about being "in the trenches" we don't find out until well towards the end of the article that Ms. Carr has not really been 'in the trenches'. There is no questioning of Ms. Carr by Ms. Silcoff about whether Ms. Carr has even done the most rudimentary work with end of life patients, to see if her simplistic ideas have any credence with them. We do see that she lots of non cancer patients come up and tell her they appreciate her message in the context of some non cancer related situation. The lack of cancer sufferers feedback in this context is quite glaring.
Ms. Carr has joined the ranks of the millions of humans world wide who has been diagnosed with a cancer. Her answer was to tell people to be positive thinkers and that her positive thinking, and her taking over her own treatment, somehow is part of the reason she is still alive. While that is a nice fairy tale for those who are outside looking in at cancer, and for those grasping at straws in their battle for their lives, it just is adding more fuel to the fire that cancer is somehow caused by the patient. It is ultimately incredibly demeaning for the cancer patient who does not survive, and leads to anger as the patient feels that there should be more they could do to cure themselves. Ms. Silcoff spends much of the article glossing over Ms. Carr's actual support of other, terminally ill cancer patients.
Ms. Silcoff finally allows some skepticism of Ms. Carr, albeit it buried much later in the article. It was a welcome balance after reading such a glowing overview of Carr's fame.
For the millions of people who tonight lie in hospitals, hospices, and homes, dying of cancer, with caregivers waking throughout the night to care to bodily fluids, pain meds and the like, the continued drum beat of the power of positive thinking is the height of hypocrisy. It is the ultimate American lie, that the patient is somehow responsible for their disease, which is the root of the message of positive thinking. "If only you had been more positive you might have survived." and Ms. Silcoff gives credence to this lie. It is a dis-service that should be easy to see in this day and age of a more public face to cancer. The thing that could most help cancer patients and their caregivers is honesty. Honesty that, yes, the patient is facing what is likely sure imminent death. And given that, they can make honest assessments, as best they can given the possible pain meds they are on, to make decisions based on fact, and not fantasy.
Tuesday, July 26, 2011
The Mexican Stem Cell Clinic
The Mexican “Stem Cell” Clinic ©
by Al Bergstein
The following story is a chapter of a longer book/article I have been writing on my late wife’s journey through cancer. Since ABC.com published a very positive story about Dr. Diaz, I felt it was time to publish this piece, to give another side to his work, one that I found very disturbing in retrospect. The ABC story can be found at: http://abcnews.go.com/Health/print?id=2854999)
Sick people are traveling long distances, and some are spending their life savings, to be “cured” by Dr. Diaz and others like him. Claims abound. Are these supposed cures real? Dr. Diaz has been quoted saying that he uses “live cells” and not “stem cells”. But, as you will read, this is a very small distinction to his patients, many of whom are in full belief he is using stem cells. In addition, having sat in his office, it was my impression that his methods hardly seem to qualify as methodology that researchers use or accept. Is he actually harming his patients, or hastening their deaths? If he is, in fact, using steroids, rather than some “stem cell magic”, then people should know, and pay appropriately. It would be worthy of Dr. Diaz to allow a full independent review of his methods by other independent medical staff, such as the medical school of the University of Mexico (UNAM) , and submit qualified peer review capable documentation. Failing that, his work seems like a something less than real medicine.
No reuse of this in any for-profit publication is allowed without first getting my written permission. Any of you working with patients who say that they may want to go to a stem cell clinic, especially since the publication of the ABC.com story, can share this freely, as long as there is no fee being charged to share it.
I am actively seeking a publisher for the completed story.
Al Bergstein
July 2011
______________________________________________________
January 2005 - To the "stem cell" clinic in Mexico
We had been hearing about the Mexican stem cell clinic for a few months. My wife's aunt and uncle lived in Yuma in the winter. They had been to see the doctor who ran the clinic.
Yuma is a town of 88,000 in southwestern Arizona. Sitting in the middle of the Sonoran Desert, it straddles the border of Mexico, which you would think would make it ground zero of the controversy over illegal immigration. However, it’s just far from anywhere, so that illegal crossings wouldn't gain much. Phoenix is well over an hour away, and the American Border Patrol are a strong presence. Yuma is a retirement town. The 95,000 visitors a year during the winter months are not there just for its remote beauty, as the city is surrounded by lots of flat barren desert, a few hills to the east. They come for its climate and access to cheap Mexican prescription drugs, medical and dental care. It could be assumed to have sprung up overnight, since it doesn't have much of what anyone would call a downtown, mainly a sprawl of strip malls and suburban housing tracks. But it has been here since the 1500’s.
While Yuma has its subdivisions, it also has vast tracks of mobile homes, pleasant places where the retirees congregate, with community centers and activities every day. But it also is more telling to travel just outside of town. There are motor homes of the landless scattered all over the countryside, some in the most inhospitable places, as if The Wizard of Oz's tornado had swept through Kansas and deposited the $100,000 (or higher) rolling homes out here.
The real action isn’t in Yuma though, but about 10 miles west, across the small border crossing at Los Algodones. You won’t even find a mention of Los Algodones on Yuma’s official web site. Los Algodones has become the reason that most of these elderly Americans drive down to Yuma, rather than elsewhere in Arizona. Los Algodones is a small town that nestles up to the border. Crossing through the border, often waved through if white and over 50, you are faced with what appears to be a Mexican town that defies the normal statistics of “poor” Mexico. None of the squalor of other border towns such as Tijuana show here. The small downtown is buzzing with activity, shops advertising all sorts of extremely low cost prescription drugs. It appears that many of the shop owners seem to drive BMW’s. To all appearances, it seems to be doing very well. There doesn't appear to be any crime.
It is hard to know whether there is real regulation of the prescription drug industry in Mexico. You wouldn’t know it by looking at Los Algodones. Anything you want is hawked here on the streets, in front of the stores. Runners come to your car, willing to watch your car, or even park it right in front, if you are too infirm. As to the medicines, there is no way to be sure that the pill that claims to be a regulated drug is not fake. A close friend who is a doctor in the US and has worked on a state board of physicians has analyzed some of the drugs coming in, and says that a very high percentage appear to be fakes. He calls it a growth industry for crime syndicates. The people buying drugs there want to believe these pills are real. But they have no way of knowing.
Just outside of the downtown core are the clinics, setup for medical and dental care. And that’s where you will find Dr. Jose Diaz Barboza, whom we had been told was the “stem cell doctor”.
Karen's aunt and uncle had been going to see Dr. Diaz because of her uncle John's unspecified health problems. He had been having various serious attacks over the last few years, and they were getting worse. John was an old time West Coast liberal, had knocked around after WWII, fished in Alaska for many years, lived alone on an island up there, ended up getting a job driving a beer truck and was involved in some of the nastiest labor strikes that occurred during the 50's in Seattle. He had been an alcoholic (now reformed) and a brawler. His flattop crew cut, and wiry tough demeanor belied a kindness and humor that were always a wonderful counterpart to the Calvinist attitude of much of the rest of her family. He was an unabashed liberal and would rail at the Republicans in office, to the dismay of the born again Christians present at the yearly family gatherings.
John and Anne had been seeing the stem cell doctor, and reported good results. John would go over the border, pay a large sum of money to the doctor who, he said, was injecting him with something that he believed were stem cells. John would then feel good enough to walk away "healed" for some length of time. John claimed his brother, suffering from emphysema, had gone to the doctor, had one shot, and got rid of his breathing canister. Karen was intrigued, and I was curious enough to go along with this to see what this man was doing down there. We luckily had enough money that it wouldn't matter much if it didn't work. If it did, it would be wonderful.
We bought a new van for the trip, as Karen wasn't able to fly in her condition, and the old van was not reliable enough. Contacting the doctor's office by phone, they then hooked us up with the doctor via email. He would be available in the weeks after January 1. It would be a good fit, as I could take vacation time off, we could see my folks in Tucson, see John and Anne, and also meet the mysterious man who was the technical support for the software that didn't appear to work, that ran Karen's " QXSI machine". (described in a previous chapter).
The trip down was hard. We had setup the back of the van for her to lie in, since she couldn't sit up, given her bone cancer. Her father had built a floor panel for her and we had installed special foam for her to lie on. With the cancer growing in her lower spine, every bump of the road brought pain. She was fighting the need to take morphine, as she believed it would be admitting defeat if she did.
The “Miracle” Doctor
We had called Dr. Diaz's clinic to setup the appointment, but were told that there were no "appointments", in the normal sense of that word. The patient was expected to show up first thing in the morning and sign in at the front desk. I thought that a rather odd way to run a medical business. The clinic would open at 8:30, so, given the distance that people had come to see him, it seemed wise to show up early. We crossed the border easily at 7:30, arriving just minutes later at the clinic, in a typical residential area on the outskirts of the main part of town. A van was already parked outside the door. We parked behind them, and waited. At 8:30 the door opened and I went inside to sign up. I was told that it would probably be a few hours before we would see the Doctor, which I also thought odd since there was only one name in front of ours.
The clinic waiting room was clean, a TV played with a Mexican soap opera and other standard morning fare in Spanish. There was a small breezeway that attached a house next door with the typical gate between them. I assumed it was the doctor's home. A tall assistant rushed in and out, I wasn't sure what his job was. Apparently, there was also a dentist attached to the clinic. Cheap Mexican dental work is another reason people cross the border.
Finally, around 11, the receptionist ushered us into an office down the hall. The room was large, and spare. The doctor sat behind an ordinary desk, with an examining table in the far corner. Some bookshelves with medical books were behind him, along with pictures of family. His degrees were on the wall. The room gave the appearance of being larger than needed, and rather spare for such a formidable job as stem cell injections. It had more of a feel of a something other than a doctor's office, as those of us in the U.S. might expect. Other than the examining table there was little else you would assume was medical in nature.
Dr. Diaz spoke very fluent English, with a mild accent. He explained to us that he had gotten his medical degree in Cuba, and had come to Mexico after practicing there for many years. He said he had become excited by the new advances in stem cell research and that he wanted to be able to attempt cutting edge work that couldn't be done in the US. He claimed to have been at many conferences over the last few years on the latest in stem cell research, and I have no reason to doubt that he may well have been. (Later I tried to see if he had published any peer review papers at these conferences. The answer appeared to be no). His treatments, he said, were of two types. One was stem cells that were lamb cells, less potent, and the other, a more expensive treatment were human cells. Since this visit, I have heard the doctor quoted that he actually injects “live cells” from umbilical cords, but that was not what he was saying behind closed doors in his office, nor was it what any of the people who we discussed had heard when they were there.
He was clear that he was concerned about the source of the cells, and that they were not from aborted fetuses. His idea was to inject the cells in the area of the cancer, where they would hopefully pick up the characteristics of the normal cells, reproducing rapidly because of their age (embryonic cells reproduce faster than cells of mature humans, that's why you stop growing at some age). This infusion of new healthy cells would then hopefully overwhelm the cancer cells, killing them. I asked about how long all this would take, and he said that Karen should see some results immediately, but that the cancer should be in remission within three to four weeks. I asked if we would need to do another treatment, and he said, no. It probably would be enough, though it might be needed. It all sounded rather rational. We discussed costs, and he said that the lamb cells were $7,000 and the human cells were $14,000. Others who have been quoted in the press appear to have paid less. My guess is that he charges whatever he thinks you can or will pay, and he asks lots of questions about your lifestyle and work before the money is ever discussed. He may have done some background checking on the Internet. He said he’d take check or cash. I told him we'd pay in check. He was fine with that. It all put us at ease.
We agreed and he said that today, he would inject Karen with some special patented vitamins that he had invented, and put her in a hyperbaric chamber (the kind that is used to de-pressurize scuba divers with the "bends".) which he claimed would relieve some of the pressure on her spine. That would be part of the cost, no extra charge. He would put her in it for an hour, and again tomorrow after the next treatment. Normally the charge would be $100 USD. He had her get on the examining table, did a cursory examination, and then got out a clear vial and needle, and injected her with the "vitamins", just under the skin. I knew enough to know that the depth of the injection was very shallow, and thought that somewhat odd, that he wasn't attempting to find a vein. I asked him what was in the injection, and he again said that he had found a special mixture of vitamins that he had "patented" and that they would help with the uptake of the stem cells. Later, a friend's wife, who is a medical doctor, told me that what Diaz had injected were most likely steroids. Apparently, steroids are used to reduce the swelling in cancer sites. Often there is swelling in areas that surround the primary cancer site. Karen had rejected the notion of doing steroids months before, for personal reasons. Later, when she was much closer to death, she relented and started taking steroids, seeming, to some friends, to 'miraculously' improve. It did not heal her, only reduced the pain for a few weeks. The cancer proceeded with it's growth though. It was not stopped. While on steroids, she was able to sit up more often, allowing us to even go out to dinner a few times.
A thought crossed my mind as I saw all this happening. Dr. Diaz claimed to be doing “experimental” work, seeing what would be successful, and what wouldn’t. He claimed he wanted to find the right ‘cure’ and help people with that cure. However, as someone who has done cursory work in trying to find root causes of technical problems, and applying some scientific method to that act, I was surprised to see that Dr. Diaz kept no records, not even a patient file was open on his desk. A normal person would assume that a researcher, or a doctor on the edge of medical advances, would want to keep copious notes, so that when the time came that he would go to present his radical new findings to others, he could allow a peer review of his information to support his claims. There was none of this. He chatted away with us for over two hours, on a variety of topics related to all his work. At the end of the two hours, he asked Karen how she was feeling.
She said, “Much better!” And apparently she was. She was able to walk, without the assistance of her crutches, out to the van. She still appeared to be in pain, as she was moving very slowly, extremely jerky movements. It was all very impressive. I asked if we needed to get there so early on the following day, and he said, “No, we will work you in. Just arrive around 8:30.” He did not even ask for money at that time, saying we could pay the next day.
The following day, we arrived back at the clinic at 8:30, and were ushered past the receptionist and into the hyperbaric chamber. They asked if I wanted to go in also, but I declined. There was a young girl, with what appeared to be polio, who also entered the chamber and Karen talked to her throughout their hour together. I sat outside and read.
When we were once again ushered into the doctor’s office, about 11 AM, the first thing he said was, “So! How are you feeling today?”
Karen said she was fine, but obviously not healed. She was walking again today with the canes, and the pain was lessened, she said.
“Great!” was the reply. He, once again began chatting about the differences between the two treatments he offered, and made it clear that the human cells were, “more effective”. We told him we would choose the higher cost, as her condition was serious, we didn’t want to come back down here. We felt she needed the most effective treatment. I paid him with a check, and he proceeded to open the refrigerator in his office, and extract a vial of milky, somewhat reddish liquid. He explained that the cells were frozen, and would require a short time to defrost. He rolled the vial in his hands, like rolling a cigar. We continued chatting about stem cell research.
A humorous aside now happened. I believe it was genuine, though it could have been a setup to engender sympathy. His secretary came in and seemed to be saying that there was someone here to see him, something about a school. He excused himself to us, saying that there was a small matter he needed to attend to. We waited about 30 minutes, and could hear him talking to another man outside the door. The door opened and the two of them came in, followed by a child of about 12. The Doctor and the man, who was well dressed, chatted a while longer, and I could understand something about some kind of barbecue, along with a discussion of rain. The doctor and man shook hands and the man and child left. Dr. Diaz turned to us, “That was my son and the principal of his school.” He laughed.
“I thought my son was in trouble, that the principal would bring him here, but as you know, there has been much rain lately.” It had, in fact, been a very rainy winter, even for Arizona standards.
“Apparently the school roof has been leaking a great deal. All the classrooms are leaking. I am a man of substance here in Los Algodones, and the principal said that they don’t have the money to put a new roof on the school. I told him that I would hold a barbecue to do what you Americans call a “fundraiser”, I believe. I will invite all the doctors of the town and have them all donate to the new roof. We will make this happen.” We all chuckled.
He then injected Karen with the stem cells. She did say that it was painful, but bearable. He had her lie down and wait a while. She didn’t improve immediately like she had the previous day. Eventually, after some 30 minutes or so, he told her she could leave. I helped her out to the van, and we drove back off to Arizona.
We left Arizona after that. The drive back up the coast was extremely strenuous. Karen seemed to worsen as the days advanced. Her pain as she lay there in the back bed of the van, was overwhelming and extremely hard for me to ignore. She rarely would ever yell out, but her constant inhaling deeply and quickly through gritted teeth told me that she was in very bad shape.
On the way back, as we drove through Oregon, we eperienced an odd coincidence. We were listening to National Public Radio’s Science Friday, and Ira Flatow was interviewing the leading stem cell research scientist in the United States. Ira was asking him what the state of the art was in regards to stem cell research and what needed to happen next. Karen was listening intently.
(It’s still available online. You will need either Real Networks player or Windows Media Player to listen in. It’s about a 15 minute segment.) http://www.npr.org/templates/story/story.php?storyId=4273768
The stem cell researcher said that they were still some years from being able to use stem cells for treatment of any disease. He said that they just couldn’t inject stem cells into a patient with cancer, for example. There was no guarantee that the cells wouldn’t take on the cancerous cell growth, as opposed to the healthy cell growth. It was seemed to be a blow to her. Karen had never really wanted to understand whether the work Dr. Diaz was engaged in was actually based in science. She had accepted it all as a very real possibility. The story on the radio made it clear that there was no way that Dr. Diaz could be engaged in science. Driving on, Karen had nothing to say for a very long time.
We never saw Dr. Diaz again, nor did he ever contact us to find out if Karen improved. Her uncle John died of his illnesses in June. His brother’s emphysema also returned, killing him as well. Karen's condition only got worse. I considered the cost of the trip as our contribution to a poor Mexican school getting a new roof.
In February, over President's Day weekend, the next phase of her illness, the real beginning of the end, began.
by Al Bergstein
The following story is a chapter of a longer book/article I have been writing on my late wife’s journey through cancer. Since ABC.com published a very positive story about Dr. Diaz, I felt it was time to publish this piece, to give another side to his work, one that I found very disturbing in retrospect. The ABC story can be found at: http://abcnews.go.com/Health/print?id=2854999)
Sick people are traveling long distances, and some are spending their life savings, to be “cured” by Dr. Diaz and others like him. Claims abound. Are these supposed cures real? Dr. Diaz has been quoted saying that he uses “live cells” and not “stem cells”. But, as you will read, this is a very small distinction to his patients, many of whom are in full belief he is using stem cells. In addition, having sat in his office, it was my impression that his methods hardly seem to qualify as methodology that researchers use or accept. Is he actually harming his patients, or hastening their deaths? If he is, in fact, using steroids, rather than some “stem cell magic”, then people should know, and pay appropriately. It would be worthy of Dr. Diaz to allow a full independent review of his methods by other independent medical staff, such as the medical school of the University of Mexico (UNAM) , and submit qualified peer review capable documentation. Failing that, his work seems like a something less than real medicine.
No reuse of this in any for-profit publication is allowed without first getting my written permission. Any of you working with patients who say that they may want to go to a stem cell clinic, especially since the publication of the ABC.com story, can share this freely, as long as there is no fee being charged to share it.
I am actively seeking a publisher for the completed story.
Al Bergstein
July 2011
______________________________________________________
January 2005 - To the "stem cell" clinic in Mexico
We had been hearing about the Mexican stem cell clinic for a few months. My wife's aunt and uncle lived in Yuma in the winter. They had been to see the doctor who ran the clinic.
Yuma is a town of 88,000 in southwestern Arizona. Sitting in the middle of the Sonoran Desert, it straddles the border of Mexico, which you would think would make it ground zero of the controversy over illegal immigration. However, it’s just far from anywhere, so that illegal crossings wouldn't gain much. Phoenix is well over an hour away, and the American Border Patrol are a strong presence. Yuma is a retirement town. The 95,000 visitors a year during the winter months are not there just for its remote beauty, as the city is surrounded by lots of flat barren desert, a few hills to the east. They come for its climate and access to cheap Mexican prescription drugs, medical and dental care. It could be assumed to have sprung up overnight, since it doesn't have much of what anyone would call a downtown, mainly a sprawl of strip malls and suburban housing tracks. But it has been here since the 1500’s.
While Yuma has its subdivisions, it also has vast tracks of mobile homes, pleasant places where the retirees congregate, with community centers and activities every day. But it also is more telling to travel just outside of town. There are motor homes of the landless scattered all over the countryside, some in the most inhospitable places, as if The Wizard of Oz's tornado had swept through Kansas and deposited the $100,000 (or higher) rolling homes out here.
The real action isn’t in Yuma though, but about 10 miles west, across the small border crossing at Los Algodones. You won’t even find a mention of Los Algodones on Yuma’s official web site. Los Algodones has become the reason that most of these elderly Americans drive down to Yuma, rather than elsewhere in Arizona. Los Algodones is a small town that nestles up to the border. Crossing through the border, often waved through if white and over 50, you are faced with what appears to be a Mexican town that defies the normal statistics of “poor” Mexico. None of the squalor of other border towns such as Tijuana show here. The small downtown is buzzing with activity, shops advertising all sorts of extremely low cost prescription drugs. It appears that many of the shop owners seem to drive BMW’s. To all appearances, it seems to be doing very well. There doesn't appear to be any crime.
It is hard to know whether there is real regulation of the prescription drug industry in Mexico. You wouldn’t know it by looking at Los Algodones. Anything you want is hawked here on the streets, in front of the stores. Runners come to your car, willing to watch your car, or even park it right in front, if you are too infirm. As to the medicines, there is no way to be sure that the pill that claims to be a regulated drug is not fake. A close friend who is a doctor in the US and has worked on a state board of physicians has analyzed some of the drugs coming in, and says that a very high percentage appear to be fakes. He calls it a growth industry for crime syndicates. The people buying drugs there want to believe these pills are real. But they have no way of knowing.
Just outside of the downtown core are the clinics, setup for medical and dental care. And that’s where you will find Dr. Jose Diaz Barboza, whom we had been told was the “stem cell doctor”.
Karen's aunt and uncle had been going to see Dr. Diaz because of her uncle John's unspecified health problems. He had been having various serious attacks over the last few years, and they were getting worse. John was an old time West Coast liberal, had knocked around after WWII, fished in Alaska for many years, lived alone on an island up there, ended up getting a job driving a beer truck and was involved in some of the nastiest labor strikes that occurred during the 50's in Seattle. He had been an alcoholic (now reformed) and a brawler. His flattop crew cut, and wiry tough demeanor belied a kindness and humor that were always a wonderful counterpart to the Calvinist attitude of much of the rest of her family. He was an unabashed liberal and would rail at the Republicans in office, to the dismay of the born again Christians present at the yearly family gatherings.
John and Anne had been seeing the stem cell doctor, and reported good results. John would go over the border, pay a large sum of money to the doctor who, he said, was injecting him with something that he believed were stem cells. John would then feel good enough to walk away "healed" for some length of time. John claimed his brother, suffering from emphysema, had gone to the doctor, had one shot, and got rid of his breathing canister. Karen was intrigued, and I was curious enough to go along with this to see what this man was doing down there. We luckily had enough money that it wouldn't matter much if it didn't work. If it did, it would be wonderful.
We bought a new van for the trip, as Karen wasn't able to fly in her condition, and the old van was not reliable enough. Contacting the doctor's office by phone, they then hooked us up with the doctor via email. He would be available in the weeks after January 1. It would be a good fit, as I could take vacation time off, we could see my folks in Tucson, see John and Anne, and also meet the mysterious man who was the technical support for the software that didn't appear to work, that ran Karen's " QXSI machine". (described in a previous chapter).
The trip down was hard. We had setup the back of the van for her to lie in, since she couldn't sit up, given her bone cancer. Her father had built a floor panel for her and we had installed special foam for her to lie on. With the cancer growing in her lower spine, every bump of the road brought pain. She was fighting the need to take morphine, as she believed it would be admitting defeat if she did.
The “Miracle” Doctor
We had called Dr. Diaz's clinic to setup the appointment, but were told that there were no "appointments", in the normal sense of that word. The patient was expected to show up first thing in the morning and sign in at the front desk. I thought that a rather odd way to run a medical business. The clinic would open at 8:30, so, given the distance that people had come to see him, it seemed wise to show up early. We crossed the border easily at 7:30, arriving just minutes later at the clinic, in a typical residential area on the outskirts of the main part of town. A van was already parked outside the door. We parked behind them, and waited. At 8:30 the door opened and I went inside to sign up. I was told that it would probably be a few hours before we would see the Doctor, which I also thought odd since there was only one name in front of ours.
The clinic waiting room was clean, a TV played with a Mexican soap opera and other standard morning fare in Spanish. There was a small breezeway that attached a house next door with the typical gate between them. I assumed it was the doctor's home. A tall assistant rushed in and out, I wasn't sure what his job was. Apparently, there was also a dentist attached to the clinic. Cheap Mexican dental work is another reason people cross the border.
Finally, around 11, the receptionist ushered us into an office down the hall. The room was large, and spare. The doctor sat behind an ordinary desk, with an examining table in the far corner. Some bookshelves with medical books were behind him, along with pictures of family. His degrees were on the wall. The room gave the appearance of being larger than needed, and rather spare for such a formidable job as stem cell injections. It had more of a feel of a something other than a doctor's office, as those of us in the U.S. might expect. Other than the examining table there was little else you would assume was medical in nature.
Dr. Diaz spoke very fluent English, with a mild accent. He explained to us that he had gotten his medical degree in Cuba, and had come to Mexico after practicing there for many years. He said he had become excited by the new advances in stem cell research and that he wanted to be able to attempt cutting edge work that couldn't be done in the US. He claimed to have been at many conferences over the last few years on the latest in stem cell research, and I have no reason to doubt that he may well have been. (Later I tried to see if he had published any peer review papers at these conferences. The answer appeared to be no). His treatments, he said, were of two types. One was stem cells that were lamb cells, less potent, and the other, a more expensive treatment were human cells. Since this visit, I have heard the doctor quoted that he actually injects “live cells” from umbilical cords, but that was not what he was saying behind closed doors in his office, nor was it what any of the people who we discussed had heard when they were there.
He was clear that he was concerned about the source of the cells, and that they were not from aborted fetuses. His idea was to inject the cells in the area of the cancer, where they would hopefully pick up the characteristics of the normal cells, reproducing rapidly because of their age (embryonic cells reproduce faster than cells of mature humans, that's why you stop growing at some age). This infusion of new healthy cells would then hopefully overwhelm the cancer cells, killing them. I asked about how long all this would take, and he said that Karen should see some results immediately, but that the cancer should be in remission within three to four weeks. I asked if we would need to do another treatment, and he said, no. It probably would be enough, though it might be needed. It all sounded rather rational. We discussed costs, and he said that the lamb cells were $7,000 and the human cells were $14,000. Others who have been quoted in the press appear to have paid less. My guess is that he charges whatever he thinks you can or will pay, and he asks lots of questions about your lifestyle and work before the money is ever discussed. He may have done some background checking on the Internet. He said he’d take check or cash. I told him we'd pay in check. He was fine with that. It all put us at ease.
We agreed and he said that today, he would inject Karen with some special patented vitamins that he had invented, and put her in a hyperbaric chamber (the kind that is used to de-pressurize scuba divers with the "bends".) which he claimed would relieve some of the pressure on her spine. That would be part of the cost, no extra charge. He would put her in it for an hour, and again tomorrow after the next treatment. Normally the charge would be $100 USD. He had her get on the examining table, did a cursory examination, and then got out a clear vial and needle, and injected her with the "vitamins", just under the skin. I knew enough to know that the depth of the injection was very shallow, and thought that somewhat odd, that he wasn't attempting to find a vein. I asked him what was in the injection, and he again said that he had found a special mixture of vitamins that he had "patented" and that they would help with the uptake of the stem cells. Later, a friend's wife, who is a medical doctor, told me that what Diaz had injected were most likely steroids. Apparently, steroids are used to reduce the swelling in cancer sites. Often there is swelling in areas that surround the primary cancer site. Karen had rejected the notion of doing steroids months before, for personal reasons. Later, when she was much closer to death, she relented and started taking steroids, seeming, to some friends, to 'miraculously' improve. It did not heal her, only reduced the pain for a few weeks. The cancer proceeded with it's growth though. It was not stopped. While on steroids, she was able to sit up more often, allowing us to even go out to dinner a few times.
A thought crossed my mind as I saw all this happening. Dr. Diaz claimed to be doing “experimental” work, seeing what would be successful, and what wouldn’t. He claimed he wanted to find the right ‘cure’ and help people with that cure. However, as someone who has done cursory work in trying to find root causes of technical problems, and applying some scientific method to that act, I was surprised to see that Dr. Diaz kept no records, not even a patient file was open on his desk. A normal person would assume that a researcher, or a doctor on the edge of medical advances, would want to keep copious notes, so that when the time came that he would go to present his radical new findings to others, he could allow a peer review of his information to support his claims. There was none of this. He chatted away with us for over two hours, on a variety of topics related to all his work. At the end of the two hours, he asked Karen how she was feeling.
She said, “Much better!” And apparently she was. She was able to walk, without the assistance of her crutches, out to the van. She still appeared to be in pain, as she was moving very slowly, extremely jerky movements. It was all very impressive. I asked if we needed to get there so early on the following day, and he said, “No, we will work you in. Just arrive around 8:30.” He did not even ask for money at that time, saying we could pay the next day.
The following day, we arrived back at the clinic at 8:30, and were ushered past the receptionist and into the hyperbaric chamber. They asked if I wanted to go in also, but I declined. There was a young girl, with what appeared to be polio, who also entered the chamber and Karen talked to her throughout their hour together. I sat outside and read.
When we were once again ushered into the doctor’s office, about 11 AM, the first thing he said was, “So! How are you feeling today?”
Karen said she was fine, but obviously not healed. She was walking again today with the canes, and the pain was lessened, she said.
“Great!” was the reply. He, once again began chatting about the differences between the two treatments he offered, and made it clear that the human cells were, “more effective”. We told him we would choose the higher cost, as her condition was serious, we didn’t want to come back down here. We felt she needed the most effective treatment. I paid him with a check, and he proceeded to open the refrigerator in his office, and extract a vial of milky, somewhat reddish liquid. He explained that the cells were frozen, and would require a short time to defrost. He rolled the vial in his hands, like rolling a cigar. We continued chatting about stem cell research.
A humorous aside now happened. I believe it was genuine, though it could have been a setup to engender sympathy. His secretary came in and seemed to be saying that there was someone here to see him, something about a school. He excused himself to us, saying that there was a small matter he needed to attend to. We waited about 30 minutes, and could hear him talking to another man outside the door. The door opened and the two of them came in, followed by a child of about 12. The Doctor and the man, who was well dressed, chatted a while longer, and I could understand something about some kind of barbecue, along with a discussion of rain. The doctor and man shook hands and the man and child left. Dr. Diaz turned to us, “That was my son and the principal of his school.” He laughed.
“I thought my son was in trouble, that the principal would bring him here, but as you know, there has been much rain lately.” It had, in fact, been a very rainy winter, even for Arizona standards.
“Apparently the school roof has been leaking a great deal. All the classrooms are leaking. I am a man of substance here in Los Algodones, and the principal said that they don’t have the money to put a new roof on the school. I told him that I would hold a barbecue to do what you Americans call a “fundraiser”, I believe. I will invite all the doctors of the town and have them all donate to the new roof. We will make this happen.” We all chuckled.
He then injected Karen with the stem cells. She did say that it was painful, but bearable. He had her lie down and wait a while. She didn’t improve immediately like she had the previous day. Eventually, after some 30 minutes or so, he told her she could leave. I helped her out to the van, and we drove back off to Arizona.
We left Arizona after that. The drive back up the coast was extremely strenuous. Karen seemed to worsen as the days advanced. Her pain as she lay there in the back bed of the van, was overwhelming and extremely hard for me to ignore. She rarely would ever yell out, but her constant inhaling deeply and quickly through gritted teeth told me that she was in very bad shape.
On the way back, as we drove through Oregon, we eperienced an odd coincidence. We were listening to National Public Radio’s Science Friday, and Ira Flatow was interviewing the leading stem cell research scientist in the United States. Ira was asking him what the state of the art was in regards to stem cell research and what needed to happen next. Karen was listening intently.
(It’s still available online. You will need either Real Networks player or Windows Media Player to listen in. It’s about a 15 minute segment.) http://www.npr.org/templates/story/story.php?storyId=4273768
The stem cell researcher said that they were still some years from being able to use stem cells for treatment of any disease. He said that they just couldn’t inject stem cells into a patient with cancer, for example. There was no guarantee that the cells wouldn’t take on the cancerous cell growth, as opposed to the healthy cell growth. It was seemed to be a blow to her. Karen had never really wanted to understand whether the work Dr. Diaz was engaged in was actually based in science. She had accepted it all as a very real possibility. The story on the radio made it clear that there was no way that Dr. Diaz could be engaged in science. Driving on, Karen had nothing to say for a very long time.
We never saw Dr. Diaz again, nor did he ever contact us to find out if Karen improved. Her uncle John died of his illnesses in June. His brother’s emphysema also returned, killing him as well. Karen's condition only got worse. I considered the cost of the trip as our contribution to a poor Mexican school getting a new roof.
In February, over President's Day weekend, the next phase of her illness, the real beginning of the end, began.
Wednesday, July 20, 2011
Recipe for Coffee
Recipe for Coffee - Alf Hanna
"...the only recommendation I have is to not make coffee in one of those stove top espresso makers..." supposed coffee expert on the radio.
Step 1. Buy the stove top espresso maker and ingredients
Purchase a small single shot espresso machine from Delonghi in Italy. It holds one cup of coffee worth of espresso. Buy a pound of ground, yes, ground coffee, I get mine from Peets. You do not want to be grinding coffee when you wake up, even if you are single. It’s just too much work. A good blend is “Major Dickason’s” blend. If you can’t get Peet’s, then blend something between Italian or French (which can be too bitter, why do you think they add sugar to their coffee?), and stronger than the standard Starbucks blend, which offends no one yet everyone. The key is to find something roasted enough to have real flavor, but not too roasted to avoid the burnt taste. You want a coffee that is sweet.
Remember having bought a machine like this in Italy when you lived there. A small store a few blocks off the Duomo in Milan. It was a cold, crisp day in January. She was not with you. There was a reason for that.
Step 2 - Every morning, fall out of bed, do not take a shower.
Go to the kitchen, unscrew the waist of the machine, and clean the plastic top carafe. Removing the aluminum basket that fits comfortably in the base, which is also known in the trade as a ‘boiler’, tap twice to get the old grounds into the white porcelain compost bin you keep next to the espresso machine. Rinse the screen. Filling the boiler with clear cold water, replace the coffee basket.
Remember working in England, and you made coffee like this every morning looking out over a garden and the rooftops of Reading, past the elevated train tracks and the Thames flowing in the distance. The music you made at the pubs in the evening. The long walks in London. She was with you once in a while, but usually you were on your own. You read, Histories, by Herodotus. He described the wife market of Babylonia. You wish you were back in Reading.
Step 3 - Gather your ingredients
Open the refrigerator and take out a glass airtight container of coffee. Also get out at least 2% if not whole milk (not some horrid tasting soy substitute). And while you are at it, get out jam and any bread you might have been tempted to put into the refrigerator. The jam is your wild card. Have at least five kinds in the refrigerator. It won’t kill you or break the bank. And every morning you will have a treat and a choice.
If you did not store your butter overnight in the cupboard, get that out of the refrigerator and put in microwave for no more than 10 seconds. And don’t put it back in the refrigerator! It does not belong there. You can’t spread hardened fat onto bread.
Stop and think about how lucky you are that your partner only likes tea, so you don’t have to make two cups of coffee, and your toast won’t get cold.
Step 3a - Put tea water on if partner is awake.
Step 4 - Make the coffee
Remove the plastic measuring spoon from the container. Fill the basket with coffee. Screw the carafe onto the boiler, and put the unit onto the base. Flick the switch to on.
Get out your favorite mug. It should be enough to cup in your hands on a cold morning. Fill with one shot glass full of milk. Put in microwave or on wood stove. Heat in microwave for exactly 30 seconds. Heat on woodstove until just hot enough, halfway between a baby’s bottle temperature and ‘too hot’.
Think about Oxford. The cup of coffee you drank there before she left.
Step 5: Get out toaster and insert one slice (not two) into the toaster. You’re fat enough already, and don’t need more than one piece to cut your hunger. Do not walk away from the toaster! But you can take the now heated milk out of the microwave that is beeping at you, and set it next to the coffee machine. If you are waiting on your woodstove, be sure it is lit and has warmed up. If not, buy a microwave.
At this point, the boiling water should have produced steam which pushed it’s way through the coffee and up into the carafe, filling it to just under the brim. Remove from base, and pour coffee into cup.
Add teabag to teacup. Do not use a coffee cup for tea, as the flavor of coffee is still in it. Pour boiling water into teacup, not coffee cup! Don’t worry about how long it will be in, your partner drinks it stronger than anyone should.
Remove the toast before it burns, and spread softened butter onto it. Add jam of the day.
Return to bed. Shower later.
"...the only recommendation I have is to not make coffee in one of those stove top espresso makers..." supposed coffee expert on the radio.
Step 1. Buy the stove top espresso maker and ingredients
Purchase a small single shot espresso machine from Delonghi in Italy. It holds one cup of coffee worth of espresso. Buy a pound of ground, yes, ground coffee, I get mine from Peets. You do not want to be grinding coffee when you wake up, even if you are single. It’s just too much work. A good blend is “Major Dickason’s” blend. If you can’t get Peet’s, then blend something between Italian or French (which can be too bitter, why do you think they add sugar to their coffee?), and stronger than the standard Starbucks blend, which offends no one yet everyone. The key is to find something roasted enough to have real flavor, but not too roasted to avoid the burnt taste. You want a coffee that is sweet.
Remember having bought a machine like this in Italy when you lived there. A small store a few blocks off the Duomo in Milan. It was a cold, crisp day in January. She was not with you. There was a reason for that.
Step 2 - Every morning, fall out of bed, do not take a shower.
Go to the kitchen, unscrew the waist of the machine, and clean the plastic top carafe. Removing the aluminum basket that fits comfortably in the base, which is also known in the trade as a ‘boiler’, tap twice to get the old grounds into the white porcelain compost bin you keep next to the espresso machine. Rinse the screen. Filling the boiler with clear cold water, replace the coffee basket.
Remember working in England, and you made coffee like this every morning looking out over a garden and the rooftops of Reading, past the elevated train tracks and the Thames flowing in the distance. The music you made at the pubs in the evening. The long walks in London. She was with you once in a while, but usually you were on your own. You read, Histories, by Herodotus. He described the wife market of Babylonia. You wish you were back in Reading.
Step 3 - Gather your ingredients
Open the refrigerator and take out a glass airtight container of coffee. Also get out at least 2% if not whole milk (not some horrid tasting soy substitute). And while you are at it, get out jam and any bread you might have been tempted to put into the refrigerator. The jam is your wild card. Have at least five kinds in the refrigerator. It won’t kill you or break the bank. And every morning you will have a treat and a choice.
If you did not store your butter overnight in the cupboard, get that out of the refrigerator and put in microwave for no more than 10 seconds. And don’t put it back in the refrigerator! It does not belong there. You can’t spread hardened fat onto bread.
Stop and think about how lucky you are that your partner only likes tea, so you don’t have to make two cups of coffee, and your toast won’t get cold.
Step 3a - Put tea water on if partner is awake.
Step 4 - Make the coffee
Remove the plastic measuring spoon from the container. Fill the basket with coffee. Screw the carafe onto the boiler, and put the unit onto the base. Flick the switch to on.
Get out your favorite mug. It should be enough to cup in your hands on a cold morning. Fill with one shot glass full of milk. Put in microwave or on wood stove. Heat in microwave for exactly 30 seconds. Heat on woodstove until just hot enough, halfway between a baby’s bottle temperature and ‘too hot’.
Think about Oxford. The cup of coffee you drank there before she left.
Step 5: Get out toaster and insert one slice (not two) into the toaster. You’re fat enough already, and don’t need more than one piece to cut your hunger. Do not walk away from the toaster! But you can take the now heated milk out of the microwave that is beeping at you, and set it next to the coffee machine. If you are waiting on your woodstove, be sure it is lit and has warmed up. If not, buy a microwave.
At this point, the boiling water should have produced steam which pushed it’s way through the coffee and up into the carafe, filling it to just under the brim. Remove from base, and pour coffee into cup.
Add teabag to teacup. Do not use a coffee cup for tea, as the flavor of coffee is still in it. Pour boiling water into teacup, not coffee cup! Don’t worry about how long it will be in, your partner drinks it stronger than anyone should.
Remove the toast before it burns, and spread softened butter onto it. Add jam of the day.
Return to bed. Shower later.
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