Help Please

[JasonWheezy]

I have been "blessed" with both a bad heart and COPD so I am sorry if this is the wrong section to post this. I am tired of taking all these drugs for my conditions and feel these drugs not only don't help me, but make me feel worse and so drowsy all the time.

I recently started looking at stem cell possibilities and I don't know where to start. I downloaded the Patient Guidebook for the International Stem Cell Research group, but it is not helpful at all. I look at various websites, but I"m not sure what to look for. Does anyone know a good doctor here? I search through some of the posts, but still am lost a bit. Thank you for your help.

 

[Jeannine]

HI Jason and welcome to our forum

Visit our Ask the Doctor section and the Pulmonary Disease section for information.

While we fully support stem cell therapy and I personally have been treated three times, I can tell you that I haven't seen any major improvements. However, my heart function did improve and my lung function hasn't worsened.

We are currently looking into gene therapy for some new research as well.

This forum is not only for lungs and because several other diseases are helped considerably by stem cells we keep this forum going.

 

[barbara]

Jason - When you say a good doctor "here", where are you? You may also want to check with ICMS www.cellmedicinesociety.org They have an accreditation program that means clinics/doctors that have signed up for it have agreed to follow certain guidelines and put patients in an open clinical registry. This says a lot about their commitment to safety and efficacy.

This month's Ask the Doctor is being hosted by Regenerative Medicine Institute, MX. They are in the accreditation program and treat both COPD and cardiac conditions.

The accreditation program is a rigorous one. There are even a few of the old guard at the ISSCR that are starting to agree that it is a sensible program that helps patients make informed choices. There are a lot of sharks in the water out there just waiting to take your money, so be careful and don't make hasty decisions is my advice.

Thank you for joining the forum. I am confident that in the next 2-3 years, there will be some major headway in treating lung disease.

 

[JasonWheezy]

Thank you both for your welcome and kind replies. Don't worry, I am very cautious about my health so I will take things very slow.

Jeannine- you think stem cells can help the heart, but not lungs? I looked at the Pulmonary section and yes, there didn't seem to be many miracle stories like I see on some websites.

Barbara- thank you, I will look at the ICSM and the Regenerative Mexico site this weekend more closely. I don't care where I have to go as I just want to feel a little better so I can keep working and enjoy my life a little more.

 

[Jeannine]

Jason

I do believe the stem cells can improve your heart function. Before I had my first treatment I used to have a pounding heart and heart rate of over 120 whenever I exerted myself in any way. I am now able to climb stairs without my heart rate going over 104. Of course I must add that I also stop using Albuterol because my doctor told me it's hard on the heart and he recommended Xoponex instead. This helped to reduce the palpitations. I also take 300 mg CO-Q10 every day.

 

[JasonWheezy]

Thank you Jeanine. I take the COq10 (from Costco?) for 300 mg too

I did go to the ICMS website and I saw they were investigating the death of the man at that Regenerative Medicine, Mexico clinic you spoke about. I think it is good that they are investigating, but it worries me. I have learned from my heart and lung problems- where there is smoke, there is usually fire.

I have also been speaking with a Dr. Margolis and also to a Dr. Raider-- both of them recommend I go to the Dominican Republic for treatment. Is there a special clinic in the Dominican Republic? It sounds very fishy to me. And both of those gentlemen sound more like used car salesmen than doctors. I know that isn't nice, but both kept me on the phone for about an hour each with their sales pitches.

Anyway, I just thought I would update everyone on my search. Anyone know about the clinic in the Dominican Republic?

 

[barbara]

Don Margolis is paid by clinics as a broker. When a patient goes through him, it results in a commission that the clinic pays directly to him. A patient will be directed to a clinic he works with. I am assuming that Mr. Margolis told you this upfront. Dr. Rader is of course going to recommend you go to his clinic. In my opinion, you would be far ahead to put your money into buying a used car even if it didn't run, then going to his clinic for treatment. Coincidentally, this video calls him a used car salesman:

http://www.youtube.com/watch?v=qF6XQPKawwk&feature=related

There are some other posts on here about Dr. Rader. You can use the Search function to read about them. There is NO way you could get me to go to his clinic. Do some internet searches about him as well.

The ICMS accreditation program requires that all incidents whether or not they are related to stem cell therapy be investigated if a patient is enrolled in their clinical registry. That is a good thing and doctors that choose to participate in this program have VOLUNTARILY made themselves transparent and accountable to an independent review of their practice.

Many clinics do not even bother to call patients after treatment. They would have no clue if they were dead or alive. I know this as a fact. ICMS will give a full report after their investigation. Dr. Lopez from RMI responded immediately in a professional manner. You simply will not find a lot of this type of openness in the industry.

 

[JasonWheezy]

Hi Barbara,

Thank you for your help and the link. That video of Dr. Rader was eye opening. I'm with you- no way I am going there too.

However, for Don Margolis, he said he is the founder of the stem cell company, Vescell, not a broker and he works with the "Greatest cardiologist in the world" in the Dominican Republic. He didn't tell me the hospital name I hope it is not the same one as Dr. Rader. But I will call him again and ask for more details.

I understand what you are saying about Dr. Lopez, but on the front page of that website in his video, he says that "since January, 30 people were treated, all with marked improvements" I find this hard to believe that he has a 100% success rate for 30 patients. Does the ICMS document his results also? 100% seems too good to be true.

Are there any other clinics besides Mexico and Dominican Republic? I saw one in China too. China seems scary to me, but if it can help me, I will keep an open mind.

 

[barbara]

Yes, Don started Vescell. I suppose the greatest cardiologist in the world is Dr. Grekos as he represents his company as well.

There is nothing illegal about being a broker. It's just that you will be led to the companies he represents. Some in the scientific community are none too happy with him however. They probably don't like this forum either, but non scientists can only talk about iPS cells for so long. (This link suggests that a successful blog should discuss iPS cells).

http://stemcellassays.com/2011/06/who-is-who-in-stem-cell-blogosphere/

As for Dr. Lopez, since he began the accreditation program, all patients must be submitted to ICMS for the clinical registry. Prior to beginning that program, that would not have been required. I listened to the video and Dr Perez does say that they have treated 30 patients who have seen improvements just as you say. He says success is measured on a case by case basis. He doesn't say what kind of improvements or what conditions these 30 patients had. I would want to know and would think that would be one of the questions I would ask if I was considering going there for treatment.

There are clinics all over the world. The Dominican Republic had talked about shutting stem cell clinics down, but apparently they did not follow through. You might want to look at the Ask the Doctor section and read about some of the doctors/clinics that have hosted to get more ideas.

 

[JasonWheezy]

Thank you very much Barbara. I like how you don't try to sell me on any doctors while everyone else I come across (Don Margolis, rader, etc)seems greasier than my mom's bacon!!

And you are right also- it seems if it were up only to the doctors and "scientific" community, nobody would be helped at all. Luckily there are some doctors it seems who want to actually help people rather than hand out prescriptions.

I found out that the "Greatest doctor in the world" (yes, Margolis was talking about a Dr. Grekos), Grekos doesn't even do the treatments himself! He just sits in his office in Florida and does tests. Heck- my own cardiologist will do those same tests and my insurance will pay for them. And a Dominican doctor at a hospital he won't tell me the name of, does the stem cells! And for a very cheap $54,000 not including expenses which would probably be another $5000+ LOL

I will apply to Dr. Perez' program and try to get more information. But that video scares me. From what I know, it seems almost impossible that 30 out of 30 patients got "marked improvements" no matter what disease they had and even if it is on a "case by case basis" - whatever that means. I know that not all patients improve and I can accept that, but I want the doctor to be upfront and honest about it.

As for the clinical registry, does that mean the ICSM is going to publish results at some point? If so, when?

Thanks again.

 

[barbara]

JasonWheezy - I would strongly recommend that you grill Dr. Perez on what he stated on the video. It needs clarity I would agree.

The ICMS is an independent non profit organization. I do not think they are planning to publish the results as a scientist would do in a publication, but I do not know for sure. The clinical registry will be made available, but I am not sure on what level meaning whether it will be restricted to physicians or if patients can access it as well. The information provided would be kept confidential no matter what as far as who the patient was. The data is to help with determining what methods are working the best for what conditions.

I will contact ICMS and ask for more information.



Just in -
I already got a response to your question from ICMS. This is from David Audley.

Yes, we are going to publish results. We do not have enough data to speak to anything other than safety, but hope that over the next year, we will be able to publish one to two papers on the data held in the regsitry.

 

[Dr_Perez]

Hello!

JasonWheezy,

Just a brief clarification. Barbara stated (as I did in our video) that improvement is measured on a case by case basis.

In all, the common thread is an improvement in quality of life in patients with chronic/degeneartive diseases. Some patients attribute this to a reduction in their medication requirements, increased energy/stamina, others to a decrease in requirements for supplemental O2, and others in an increase in ejection fraction (CHF patients).

All in all, patients experience a variety of positive effects. However, it is very difficult to determine statistics from such a wide range of conditions. I'd be more than happy to talk to you personally in order to share our experience and answer any questions you may have on the subject, as well as to get more specific on criteria for improvement based on a specific condition.

Have a great day!