Research and/vs Current Available Stuff

[Del]

At this point in time what I see in the research that is pointing to real human lung regeneration (that could be tracked and would show amazing improvement by the numbers)… seems to involve harvesting specific tissues from the far reaches of lung airways, or blood vessels near them or maybe tissue around alveoli, then isolating and multiplying specific cells from the tissue, and introducing the cells back to diseased tissues.

I know there are so many other avenues being explored, and being at least so careful in my writing and speculating-aloud to the point of crippled (!) I have my need here to point out I do not intend to sound too smug and assured with the statement…. Just that ‘that’s where to me it appears things are leading’ right now. Let’s imagine for a minute this is so –

Harvesting of endogenous lung tissue from patient, isolating and treating cells, making up whatever the recipe is, then introducing back through injection or inhalation or both or more. One of the greatest benefits, we assume, is that rejection is far less likely. Maybe other reasons…

putting this alongside what I am also reading about the what clinics currently offering stem cell therapy are doing, invites a bunch of questions.

What are the limits of what a stem cell clinic (such as the many currently operating in the US, in FL, CA, plus in Tijuana, those currently 'open for business which have been visited by some in this community) can do as far as procedures?

Can you say, be allowed to harvest cells using a needle (bone marrow or fat tissue), but not by way of sticking something down someone’s throat? What about the daunting problems from the clinician point of view, not operating in a standard hospital setting – legal and so on….And of course, what a shift in equipment costs and staff needed for something like that. (For an endoscopy/colonoscopy I had recently I think there were at least four staff in the room).

Additionally, there are potential legal issues when it comes to procedures if not the very cells. Did anyone read the long report from the discovery of ‘lung stem cells’ at Brigham and Women’s? Very exciting news but also at the very end you read of tons of patents being applied for. And by the way, I am not casting or suggesting judgement here, just asking – I could add that is as expected and there are sound arguments why, as glacial as it is in making progress, the traditional medical establishment and research complex is the best avenue we have. Could. Then you debate internally, and think about it a different way… Anyway, what about appropriation of methods and materials whereby Dr so-and-so in Mexico, Greece, or Nevada – up and running now with a clinic -- is limited with what they can do and cannot tap the latest, greatest promising cures and reversals of disease?

I hope to stimulate some other questions and other lines of questioning for people in this community, and maybe some clinicians reading the posts. Maybe some more questions for ‘ask the dr.’ I assume as ‘pioneers’ we must accept that this year’s treatment and current thought processes are going to be superceded, big time, next year. Or we hope. Although, considering that people are paying lots of money out of pocket right now, this is a tough thing to write. I am very inspired by the people already deciding they have nothing to lose and who feel they have been benefiting, am rooting for them all the time.

Oh – and please anyone, correct me where I have really missed something and things could be a little easier than they look – My take on this kind of thing is it is not going to be ‘easy,’ not ‘impossible’ either….

Del

 

[barbara]

Del - The FDA can move at a glacial pace so right now clinics are popping up all over offering highly experimental treatments for anyone that wants to pay for them. When you ask what they can and cannot do legally, it actually boils down to for many what they can get away with for the short term before getting caught. There are a few exceptions, but far too few.

The case of Fredda Branyon is a good example. What she was doing was highly illegal, possibly dangerous and yet she didn't just start doing it. She had been treating patients for several years. She also wasn't working alone.

Anyone can set up shop, claim to have the greatest treatment in the world, (been to a few places like that myself) find a doctor to actually administer the treatments and then find patients who are willing to come to their clinic to get treatments that may be risky or at the very least put a strain on their bank account.

As everyone should know by now, I support the ICMS accreditation program. Doctors that get involved in it are placing their procedures and practice under great scrutiny by an outside independent source. If a clinic is not participating in the ICMS program, then patients need to be extra careful in checking the credentials of the doctor and finding out what type of post treatment follow up program is included. A good question would also be to ask what is done with the post treatment data.

It's far too easy to make money when dealing with desperately ill patients.
I left BioRegenesis (Heygen or whatever the name is now) because there were no studies going on as promised. Dr. Young stated that COPD could most likely be cured in only 4 treatments using his method. In all my encounters with doctors and other clinics, I had not heard the word Cure and believe me that sounded exciting. My motivation is and always has been finding a cure. Unfortunately, the treatments have produced no cure and I have to question my sanity even believing that they would. Now, I understand that some patients are being told that for optimum results, it may require a month or two of treatments given several times a week. Of course, the cost is going to be considerably higher. Frankly, I don't understand this if 4 treatments were going to cure me. Clinics doing such experimental work with stem cells that others supposedly have no access to should most definitely not expect patients to pay out a lot of money for being lab rats. Dr. Young claimed he invented this treatment, discovered the stem cells and holds the patents and now patients are being asked to fund a for profit clinic by joining the treatment method of the month club.

The bottom line is that without a comprehensive study, it's all just one big experiment with patients footing the bill. The clinic he works with isn't alone in offering unproven treatments. As I said, clinics are popping up all over the place. Websites touting treatment for almost every condition abound. I believe Dr. Young said he can treat everything with his magical stem cells except for obesity and cancer. Other clinics treat all kinds of cancer and I am sure there are probably a few that will claim to treat obesity! When patients see these websites and see more clinics opening all the time, they are led to believe that the treatments being offered must be helping others. Personally, I would like to see strict FDA enforcement or have the FDA get out of it completely and leave stem cell treatment decisions to a doctor and his patient. Competition will drive out the clinics that are doing unsafe and questionable treatments at that point. The uncertainty now is not helping anyone.


The other problem with clinics that pay little or no attention to FDA regulations is that when someone becomes seriously ill or dies and it comes to the attention of the press, suddenly all stem cell treatments are snake oil. These types of clinics give the whole industry a black eye. If on the other hand, the clinic has been following regulations, has tracked patients diligently, worked within the confines of an IRB or a program like ICMS has, the press will not have much room to speculate.

For those that read Dr. Macchiarini's Ask the Doctor Q and A's, he said that he felt regeneration would come from within. I think he is onto something there. Current research would indicate that as well. I do hope that the research can move from mice to humans quickly. I have certainly noticed a pick up in the pace of research for lung disease lately - be it new pharmaceuticals or stem cell research.

There are a few clinics that do seem to be helping COPD patients with their treatments, but one problem is consistency. One person claims they feel much better, another one getting the same treatment will say they feel no change. We simply don't have the answers yet, but we will one day. I think some treatments can reduce inflammation and may be helping the heart more than the lungs. This makes patients feel better even though no real regeneration of the lungs as occurred. I believe Danny mentioned that in a previous post. It might explain the lack of similar outcomes.

For clinics who are endeavoring to do things the right way, I say thank you.
For those that simply want our money, I say please take your business somewhere that the sun doesn't shine.

 

[Del]

Barbara, thanks for your thoughts. I’m also glad for the ICMS, and I think it should serve as a good filter for people being asked to dip into their bank accounts and trust products and methods that basically have no track record in the standard medical settings.

I would be excited to see more daring things offered while these clinics are being largely left alone, and see them offered openly for what they are; forget the testimonials and the Getty images of sharp-eyed scientists holding beakers (which to me should say something), why not advertise the latest experiments, offer guinea pig rates, call them that, and cover one’s ass in signed consent and awareness of risk from patient and extended family. Heck, it could be like recruiting astronauts. Requiring that as patient, you learn all about what you are getting into. I mean, if as the clinician or owner of the outfit, you think you are really on the brink of getting lungs to repair themselves. Everyone is a pioneer indeed, on that honest level.

Cell therapy to reduce inflammation and help the heart sounds like a fine valid thing, why not except if the effects completely disappear eventually! I hope not.

In the short time I’ve been interested I’ve also seen that a lot of research has been going on lately, the pace is picking up as you say, very exciting.

There could also be integrated approaches. If stem cell therapies are even ‘beginning to do a little’ but not a huge whole lot – yet the collateral effects of various approaches are worthwhile (to heart, improving diffusion, reducing inflammation, etc) you could combine what seems to be working best, with one of the new bronchoscopic procedures to reduce lung volume if emphysema is a big player in the COPD. There’s no waiting for that… you can go for it just about anywhere but in the states. It appears that the retinoic acid is not completely out of the picture, it apparently did some good during trials.

Del

 

[barbara]

Del - It's not so much that they are going to get a permanent pass, but rather that the FDA moves very slowly in their investigations. In order to offer guinea pig rates, owners/doctors would have to admit what they are doing is experimenting and that they have no proof that the treatment works. I think it's an innovative idea you've come up with, but not something bound to happen.

There are some honest people in the industry, but those that aren't are giving the industry a black eye. They aren't pioneers, they are hucksters.

I also agree that a combination of different therapies may be helpful. Dr. Feinerman uses retinoic acid in his treatments. Perhaps someone who has had treatment there can let us know if it helped them.

 

[Del]

There seem to be a number of things that, if they do not yet regenerate lung tissue, seem to optimize what is there, and/or features of systems that are in a close working relationship.

If one gets say, six months of relative relief and zippy energy, that is a not a bad thing! What would be on the ethical side, is to further understand and provide more reasons why some of these things do what they do -- without continuing to suggest that lung structures are being regenerated quite the way advertised. Or quite the way we hope can, and will be one fine day very soon.

I can envision a shake up in the model of many of these clinics, rather than touting 'stem cell cure,' change their product and service description. eg if, fair enough, stem cells are being used then use the term stem cell therapy. Or 'advanced biologics therapy.' If the effects are perishable, but we are talking visiting twice a year, that might not be so awful. Well, I guess compared to dialysis and other things.

And with the change, prices would have to come down from eliminating what would be insane profit margins above operating and material costs -- if they are made possible primarily from apealing to 'cure' and taking advantage of people. Meaning driving the huksters out. I also am not familiar with the costs of these potions and operating such a thing!!! HA ha. I'm just suggesting that once you call a cheeseburger and fries a cheeseburger and fries, and accept that a cheeseburger and fries is a perfectly fine thing, also realizing that we all have to make a reasonable living... you could be left with a with a lot of positive aspects, for competition, for finessing therapies, etc.

I think that there is really a fresh business angle for someone here, if apeals to patients' sense of hoplessness and gullibility are that rampant. What if you suddenly burst on the scene with a targetted therapy, rebranding and more affordability (assuming you can operate profitably with a good volume of business). You are in some sense selling a greater opportunity to trust and different measures of improvement.

With that, I would hate to see an end to outsiders attempting to do great things, offering amazing things-- well, 'buyer beware,' right? Certainly want to keep reading of breakthroughs and studies, and of practitioners who are doing cutting edge work to ge lungs to really regenerate.

I would think it is quite important to be sure there are not problems with these treatments, long term, but I suppose even there it is as you say one big experiment. I do not read of anything alarming except in your case Barbara. Apparently, in your story with your first clinic when you became ill afterward. Glad you have had more positive experiences since then. Del

 

[barbara]

Del - My case is not nearly as alarming as some others have experienced.
As I stated I would much rather have the FDA regulate this industry in a very strict way OR leave autologous stem cell therapy up to a patient and his/her doctor as a practice of medicine. I believe that the hucksters and those treating us like lab rats while they make big profits would be routed out by the market itself. It wouldn't take long for the medical industry to know which clinics were doing legitimate treatment and which ones they would never want to send their patients to.

Just a thought. I am not an authority on what the FDA is doing. I am just a patient like most others on here who is tired of all the BS. A treatment either is working or it isn't and if a company does not even bother to follow patients for at least a year post therapy, then as far as I am concerned they are not interested in the outcome. They are much more interested in making money.

 

[alg]

Treat or die

Many people reach a point where they have no options left ;
it's "Do or Die"

I don't think I would want to live my last days in a hospital bed gasping for air;
Any option is better then that and if the treatment kills me it doesn't matter,
I 'm going to die anyway. It's assumed I would try to chose as best I can but in the end you really don't know.

As far as risk , It's a fact that about 200,000 people are killed by doctors in the U.S. every year and I don't see one protest'r with a sign saying,
"Protect us from doctors"

 

[Bobcat]

Where did you go for treatment alg. I agree it sucks that so many are killed each year. I checked it out because it seemed a lot. I would prefer to just pass from a heart attack personally. I don't want any kind of doctor or health care worker killing me. It sounds like the deaths you were mentioning are caused by various reasons. It says that patients need to look after their own safety. I agree. 200,000 is a lot of mistakes. For some people, they would have probably been better off not seeking any medical treatment at all. Scary.



200,000 Americans Killed Each Year in Hospitals by Medical Error
Tuesday, March 02, 2010 by: David Gutierrez, staff writer

Learn more: http://www.naturalnews.com/028274_hospitals_medical_error.html#ixzz1e7K2gPLE

(NaturalNews) According to "Dead By Mistake," a report detailing the findings of an investigation by the Hearst Corporation, approximately 200,000 people die in the United States every year from hospital infections and preventable medical errors. To make matters worse, the situation has not changed from 10 years ago, when the recommendations of a similar report by the federal government went ignored.

Car accidents, often classified as the leading preventable cause of death in the United States, kill fewer than 50,000 people per year.

"Ten years ago, the highly-publicized federal report, 'To Err Is Human,' highlighted the alarming death toll from preventable medical injuries and called on the medical community to cut it in half in five years," the new report says. "Its authors and patient safety advocates believed that its release would spur a revolution in patient safety. But … the federal government and most states have made little or no progress in improving patient safety through accountability mechanisms or other measures."

According to "Dead By Mistake," only 20 states require that medical errors be reported, and even among these, standards vary widely and enforcement is inconsistent. Five states are implementing mandatory reporting systems, five have voluntary systems, and 20 have no error reporting systems at all.

The Hearst report accuses lobbyists of working to ensure that the 1999 report's recommendation of a nationwide mandatory error reporting system was never implemented.

Common medical errors include prescription errors and surgeries or other procedures conducted on the wrong organ or the wrong side of the body. Common causes of medical errors include sleep deprivation by care providers, poor patient-doctor communication, insufficient nurses, poor documentation and illegible handwriting.

The report recommends that patients look after their own safety by becoming better informed about procedures and medications they are being given, which includes actively asking questions of health care providers. Specific measures, such as having a doctor mark the site of an operation in permanent marker, can also decrease the risk of certain errors.


Learn more: http://www.naturalnews.com/028274_hospitals_medical_error.html#ixzz1e7It2pDI