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Warner
04-27-2009, 10:43 PM
I have recently started my search for a stem cell theropy for my congestive heart failure - CHF. I am 39 years old with a two and four year old that I cannot keep up with. So as I see it this is my only shot at getting to a half way normal energy level for them. I found Regenecell has a clinic in Zona Rio which they tell me is a business district of Tiajuana. They use umbilcal cord cells & have some pretty lofty claims of not their response rate. My concern is that I cannot find much information on people that have been to this clinic to see how it has gone for them or if they are even an actual clinic. It always concerns me when claims of success seem to be so much higher than expected. Does anyone have any experience with this clinic that they can share?

barbara
04-27-2009, 11:41 PM
Warner - Just a couple of weeks ago, Meg posted the same question. I have copied it along with my reply to her. My advice is go with your gut instinct. Lofty claims are just that. Hang onto your money and look for a reputable clinic that has a real hands on doctor to treat you. I will be glad to send you some website information for other clinics if you wish. I have a humongous red flag waving for any operation that Casey Nabavi has his hand in and that unfortunately includes Regenecell's operation in Zona Rio.





Rengenecell Thailand
Can anyone tell me if they have been to this clinic? Are they reputable? It is so hard to weigh up which clinic to choose. Thanks Meg




Buyer Beware Big Time
Regenecell partnered up with some ridiculous deal with Casey Nabavi, former CEO of SCB. Nabavi now operates a company called Cellulogix Intl. (At least he was last week. This week there could be a new name. Who knows?). Dr. Peimer allowed Nabavi to take his patient referrals for patients that wanted treatment in Mexico. If you looked at the Regenecell site, you were not told that your treatment would be with Cellulogix and Casey Nabavi, but that is exactly what it was. There is a lawsuit that is posted on here. SCB is suing Casey Nabavi for a variety of things including his misrepresentation to clients of his degree. Nabavi got an online PhD. it is alleged so that he could call himself doctor. More than one person I have heard from thought he was a medical doctor. I guess he didn't bother to tell them differently. Make sure to read page 67 of the complaint if you really want to shudder.
Dr. Peimer could not know what was going on in Mexico because he was not in Mexico.He was in South Africa. He put his trust in Nabavi. Dr. Peimer needs to be a hands on doctor and treat his own patients. He should not farm them out to questionable companies to make a referral fee. He cannot be in South Africa, Thailand and Mexico all at the same time. I would give this a big BUYER BEWARE. There are too many good companies where you can count on who is going to be treating you and with what to risk going to one that has an iffy situation going in my opinion.
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hlichten
04-28-2009, 12:42 AM
I have recently started my search for a stem cell theropy for my congestive heart failure - CHF. I am 39 years old with a two and four year old that I cannot keep up with. So as I see it this is my only shot at getting to a half way normal energy level for them. I found Regenecell has a clinic in Zona Rio which they tell me is a business district of Tiajuana. They use umbilcal cord cells & have some pretty lofty claims of not their response rate. My concern is that I cannot find much information on people that have been to this clinic to see how it has gone for them or if they are even an actual clinic. It always concerns me when claims of success seem to be so much higher than expected. Does anyone have any experience with this clinic that they can share?

I suggest that, whatever you do, you select a clinic that will administer Autologous Adult Stem Cells (your own cells) to you using some collection and delivery method. Most use your marrow (drawn from your iliac crest near your hip) and give them back to you either via IV or via catheter direct to the heart, like during an angiogram. As to success rates of any of these methods toward congestive heart failure, I can not say, but as you surmise, and Barbara supports, I would be far more than wary of any exorbitant success claims.

As for the use of umbilical cord blood, I think that this is not the way to go, particularly for anything cardiac in nature. It is not completely proven at this point, but it seems obvious from the clinical trials going on in the world, that we are headed toward cardiac treatments based on A-ASC's. Cord blood has been used in virtually no trials anywhere. There is a minimal risk of Graft-vs-Host disease, since the cells are not yours and some rejection may occur. People who have had cord-based treatments argue that you get "just the cells", not the other blood components, but, any way you slice it, the components or cells are not yours! I have had 4 treatments and they have all been from my own blood, and I believe this to be the way to go.

The only arguments for cord cells that I have heard which sound half-way valid are that the cells are younger, and may be more viable than your own cells. I have heard and read this, but it has not been enough to convince me.

Keep in mind, whatever you do, that it is not going to be a "one-shot" treatment for congestive heart failure. If you start to see any improvement, it is going to likely take many treatments for a pronounced beneficial effect. For anyone suffering from a chronic condition, such as heart disease, COPD, etc. this is the case. Getting one stem cell treatment could help, but it won't be an ultimate solution to the illness.

Dr. Grekos (Regenocyte) is treating Congestive Heart Failure with A-ASC's.

As I said, I would be extremely wary of any clinic claiming good results for this condition with umbilical cord blood. I would have a very hard time putting any trust in such treatment. Your "gut" is giving you good advice, as I agree that the cord treatment you mentioned would be a huge mistake.

Warner
04-28-2009, 09:41 AM
Thank you for your advise. The biggest problem that I am having is not being a good traveler & living on the west coast. So trying to stay as close as possible means Mexico but that is not looking good so far. Thanks again & I will check into the two clinics that you have listed.

barbara
04-28-2009, 10:37 AM
Warner - I am sending you several west coast options via private message.
I also agree that your condition may require more than a one time treatment. Each individual is different, but for many, one treatment will not achieve the goal of reversing the condition/disease. Just bear that in mind when asking questions of the clinic or doctor. Some may offer follow up treatments for less money or may include more than one treatment in their initial price.

barbara
04-28-2009, 03:29 PM
I had to share this with anyone reading the cardiac subforum. This is an excerpt from, "Cell of Cells" by Cynthia Fox. I have given you a little information beforehand to catch you up with what Ms. Fox is writing about.


Emerson Perin is a cardiologist based at the Texas Heart Institute. He began to use NOGA, an electromagnetical mapping system in Rio de Janeiro where he once lived and had a partnership with a hospital. This metallic sensor - tracked via magnets above and below patients - was giving doctors a stunningly clear view of the heart during therapeutic procedures. He had plans to use NOGA to inject healing growth factors into hearts, but learned at a 2000 European meeting that some scientists were shooting bone marrow stem cells through animal coronary arteries and this made him wonder. He knew that stem cells are growth-factor factories which was perfect for what he wanted to do. He also wondered if when stem cells were slipped into blood if they would further clog arteries. Some studies seemed to indicate that and that more scar could be created when added to scar. He decided that it might be best to inject them right into heart muscle and only hard-to-see, scar-free muscle.

He chose Rio for his first test, not the U.S. (Does this surprise anyone?). Some basic scientists believed the cells created only blood and blood vessels; some believed they only emitted growth factors; many, including some scientists at the U.S. FDA, believed they shouldn't be used on patients until they were completely understood. (That should be in the year 3000).

Direct excerpts from the book -

Yet, says Perin, basic scientists "don't have to face dying patients". I do Every day I have to look heart patients in the eye and tell then I can't help." So he chose to do his first trial outside the U.S. maelstrom - in Rio, where NOGA was reading - confident that for end-stage patients without options he was doing the right thing.

Still he was aware of the risks. One of the first patients the Rio hospital offered him almost gave Perin himself a heart attack. "He was ashen, unable to breathe, and cachetic (starving) because you can't eat if you can't breathe. His ejection fraction (left heart pumping ability) was 10-any less than that and you're dead. (Normal is 55.) I thought he was going to die. I called the doctor in charge and said, "This guy isn't even able to lie flat. I'll go ahead and do a map on him, and if I find an area of viability maybe we'll think about it," Perin says. "Well, I found a little area in the back that showed viability. So I called the doctor again and said, 'Should we do this?' I was really worried." Given the controversy surrounding stem cells, a single death could end the whole trial.

Persuaded eventually by the notion that the sickest patients stand to gain the most, "I took a deep breath, injected the guy, and went back to Texas. When I came back 3 months later to inject some more patients, the one who was so gray? He was tan and smiling. One month after that, he was jogging on the beach. That's when I called the improvement we started to see, 'the tanning factor.' And that's when I thought, "This is no placebo effect."

hlichten
04-28-2009, 11:25 PM
I am very well aware of Emerson Perin and his work and his trials. I actually tried to get treatment from him in Rio using this method. Then, I tried 3 times to get into his trial in Houston. I think I described to you (Barbara) the 18 followup visits they wanted (I am not in Houston) and the multitude of tests they wanted prior to trial enrollment. It was just a preposterous amount of testing that they wanted. I spoke several times to Dr. Perin's assistants and finally gave up on being involved in his trials, although he seems to be doing some of the most relevant work in his field. I think he has moved on to a Stage II and now to a Stage III.

Anyhow, I have been several times before and after that, to Texas Heart Institute. It is a really awesome facility, and they do amazing work there. One of my cardiologists has clinic there.

(It is definitely a sad story when you have more than one cardiologist, as I do!) :)

barbara
04-29-2009, 01:00 PM
Harv - This is what upsets me the most. Someone like you who has tried diligently to get help for your condition that affects your life 24/7 and you don't even get a reply. Dr. Perin himself would probably not like to know this as I think from everything I am reading about him, he seems a compassionate man. Maybe, too overwhelmed however with all the people who could benefit from what he is doing and all the damn paperwork he must have for the FDA. I think the FDA should take it upon themselves to conduct their own trial of sorts. This trial would follow up on the deaths of all the people in this country that could have undoubtedly benefited from stem cell treatment and were not allowed to have that treatment because the FDA was hell bent on election to have endless clinicals with outrageous requirements so that they purportedly can make sure that treatment is safe and no harm comes to those getting treatment. The FDA just isn't getting it that the greater harm is in living with chronic and terminal conditions and then dying from them. What moronic reasoning are they using to come to their conclusions? There is no "better safe than sorry" because there is only going to be sorry for those of us denied treatment. Dr. Perin has been doing this treatment for several years now. How many have been lost that could not get treatment or get in a clinical? This is what the FDA needs to study. This pathetic mentality keeps me awake at nights figuring out more ways I can get people motivated to get behind ASCTA www.safestemcells.org

hlichten
04-29-2009, 02:02 PM
I got a reply, I spoke to one of the coordinators a couple of times.
The requirements for enrollment and participation in the trial were just
too damned complicated.

Too many followup visits and too many tests that I had already done, plus many others.

Also, 6 months to find out if you got stem cells or water!!

Then, after 6 months, if you received placebo, they would offer you the cells.

barbara
04-29-2009, 03:02 PM
That makes me feel slightly better knowing that you got a reply. I personally could not physically go through so many tests and procedures that many clinicals require. I would push myself if I knew without a doubt that it was the real thing and not a placebo, but to go through all of that when a person is seriously ill to find out it was a placebo, would be too difficult for me. I am sure that there are lots of others that would feel the same. Clinicals definitely restrict those that need them the most.