Institute of Cellular Medicine

[oashman]

Hi everyone

Can anyone offer me some info/insight into this company? ICM said they can help me. But there is not much info on their procedure. All I know is that they are in Costa Rica and they use Allogeneic Mesenchymal and/or CD34+ Stem Cell Procedures. They want $15,500 and of course travel, hotels, etc. are all extra, so I am looking at probably $30,000.

Any advice would be greatly appreciated.

 

[barbara]

Icm

You might try contacting Nassin or Harvey Lichten via the forum. Nassin's brother got treatment there and Harv is familiar with the company and is a very nice person who would probably share with you.

 

[oashman]

Dr Fernandez

You might try contacting Nassin or Harvey Lichten via the forum. Nassin's brother got treatment there and Harv is familiar with the company and is a very nice person who would probably share with you.

I finally received a reply from Dr. Fernandez and I must say I am very disturbed. I asked the basic questions that John suggested in his post. The response I got to half the questions was "this is confidential" and to the other half was "look at Pubmed." I do not know what this doctor expects, but before I travel around the world and spend tens of thousands of dollars, I think I deserve some direct and candid answers to the questions. Any thoughts?

 

[barbara]

Short on answers

It seems a somewhat strange reply to me, but many of the doctors consider much of what they are doing to be confidential. I do believe he is a good doctor and I also feel you have the right to ask the questions, but if he does not want to answer everything, I guess there isn't much you can do. I guess stem cell therapy is becoming very competitive and many doctors are reluctant to give out certain information. To the patients, we are just trying to learn what we can to determine if this is the kind of treatment that will help us. These are trying times for sure that will call for all of your Pioneering skills and instincts to get you what you want.

 

[oashman]

It seems a somewhat strange reply to me, but many of the doctors consider much of what they are doing to be confidential. I do believe he is a good doctor and I also feel you have the right to ask the questions, but if he does not want to answer everything, I guess there isn't much you can do. I guess stem cell therapy is becoming very competitive and many doctors are reluctant to give out certain information. To the patients, we are just trying to learn what we can to determine if this is the kind of treatment that will help us. These are trying times for sure that will call for all of your Pioneering skills and instincts to get you what you want.

I can understand confidentiality issues well. But if I am not getting answers to simple questions such as
1. How many procedures have you performed.
2. What might I expect from this procedure.
3. How long will the treatment last.
4. Will I need to come back for additional shots/treatments.

What am I to think? It is going into the unknown, fine by me, but without basic information, it is beyond the unknown.

 

[barbara]

Very strange

I agree with you totally. Did the reply actually come from the doctor or someone in his clinic? I wonder if there is an interpretation problem. That doesn't seem likely, but I wouldn't rule it out. Still, without those answers it presents a quandary. This seems out of character for this doctor. I have no other explanation. Anyone else care to comment?

 

[shazza]

answers to questions

I can understand confidentiality issues well. But if I am not getting answers to simple questions such as
1. How many procedures have you performed.
2. What might I expect from this procedure.
3. How long will the treatment last.
4. Will I need to come back for additional shots/treatments.

What am I to think? It is going into the unknown, fine by me, but without basic information, it is beyond the unknown.

hi
as l cant talk my sister asks these questions on my behalf and like you say its a lot of money to hand over!!! these are the first questions my sister asks and up to now everyone has answered, l dont understand why anyone would say the answers to these questions are confidential and l would be suspicious of anyone who refused to answer!!!
sharon

 

[oashman]

hi
as l cant talk my sister asks these questions on my behalf and like you say its a lot of money to hand over!!! these are the first questions my sister asks and up to now everyone has answered, l dont understand why anyone would say the answers to these questions are confidential and l would be suspicious of anyone who refused to answer!!!
sharon

Absolutely my point. This doctor thinks patients will fly to Argentina and hand over the cash without having basic info beforehand? Seems pretty ridiculous to me.

 

[shazza]

Absolutely my point. This doctor thinks patients will fly to Argentina and hand over the cash without having basic info beforehand? Seems pretty ridiculous to me.

hi
it seems pretty ridiculous to me too and yet there are people that are so desperate that they dont ask any questions, l was almost that desperate myself, almost but not quite as bad but l understand how they feel!! luckily for me the clinic was closed by the government before l handed my money over but even then all those questions were answered by the drs!!
im taking my time now in choosing somewhere, l want to be 100% certain of the place l choose! im worried about a friend of mine just now as l believe she is that desperate to get her 15 year old daughter well!! (her daughter was brain damaged by a disease that is related to the disease that l had and cant walk, speak or communicate at all) her mother is focused on getting her daughter well as any parent would be but l dont believe shes checking things out before she tries them!!!
sharon

 

[barbara]

Why no answers?

I can say that the doctor in Argentina has a very good reputation. There is obviously a language problem which may make it difficult to get answers unless you speak that language. I sincerely wish that wasn't a problem, but it will continue to be until there are clinics in every country or the most successful ones realize the importance of communicating with potential patients in more than one language and hire staff to take care of it. There are no guarantees however, even if you get your questions answered just like Sharon points out. Knowing the right answers to the test doesn't mean you know any more than the right answers to the test. I agree that you need more than non committal replies, but be careful not to make that your whole criteria for accepting or rejecting a company or doctor.

 

[oashman]

I can say that the doctor in Argentina has a very good reputation. There is obviously a language problem which may make it difficult to get answers unless you speak that language. I sincerely wish that wasn't a problem, but it will continue to be until there are clinics in every country or the most successful ones realize the importance of communicating with potential patients in more than one language and hire staff to take care of it. There are no guarantees however, even if you get your questions answered just like Sharon points out. Knowing the right answers to the test doesn't mean you know any more than the right answers to the test. I agree that you need more than non committal replies, but be careful not to make that your whole criteria for accepting or rejecting a company or doctor.

Barb, I understand what you are saying, but I must disagree as to the language barrier. If they have good enough English to write "that is confidential" than they could also give a better answer. As simple question like "how many procedures have you performed" requires a simple answer using digits, not even language/letters. His unwillingness to answer does not stem from a language barrier, in my opinion. I could be wrong.

 

[hlichten]

OK, I think I will finally step into this fray <grin>...

I think you are wrong.
It is a language barrier, and/or someone other than Dr. Fernandez Vina typed that reply for him.
That is my guess anyhow.

I exchanged email with Dr. Fernandez Vina and Dr. De Paz in Miami a few times. I chose not to go there partially because of the communication issue, but I asked quite a few questions and got very civil answers.

Dr. De Paz speaks quite good English and understood just about everything I said on the phone. He was quite friendly during our phone call and emails.

Dr. Fernandez Vina either speaks poor English or types poor English, not sure, since I have never spoken to him.

Again, I experienced no tone like you did. Dr. Fernandez Vina sent me several documents about his treatment of my condition.

I do still have cell phone numbers for both doctors if you need them, but...

If you are the person looking for Crohn's disease treatment, and you have spoken to Germany and they don't have a treatment, then neither does Dr. Fernandez Vina. Germany and Argentina both use marrow-based cells, the same treatment.

Again, every indication of what I have read is that Dr. Fernandez Vina is a fine doctor.

Wish I could help more.

Harv

Barb, I understand what you are saying, but I must disagree as to the language barrier. If they have good enough English to write "that is confidential" than they could also give a better answer. As simple question like "how many procedures have you performed" requires a simple answer using digits, not even language/letters. His unwillingness to answer does not stem from a language barrier, in my opinion. I could be wrong.

 

[oashman]

OK, I think I will finally step into this fray <grin>...

I think you are wrong.
It is a language barrier, and/or someone other than Dr. Fernandez Vina typed that reply for him.
That is my guess anyhow.

I exchanged email with Dr. Fernandez Vina and Dr. De Paz in Miami a few times. I chose not to go there partially because of the communication issue, but I asked quite a few questions and got very civil answers.

Dr. De Paz speaks quite good English and understood just about everything I said on the phone. He was quite friendly during our phone call and emails.

Dr. Fernandez Vina either speaks poor English or types poor English, not sure, since I have never spoken to him.

Again, I experienced no tone like you did. Dr. Fernandez Vina sent me several documents about his treatment of my condition.

I do still have cell phone numbers for both doctors if you need them, but...

If you are the person looking for Crohn's disease treatment, and you have spoken to Germany and they don't have a treatment, then neither does Dr. Fernandez Vina. Germany and Argentina both use marrow-based cells, the same treatment.

Again, every indication of what I have read is that Dr. Fernandez Vina is a fine doctor.

Wish I could help more.

Harv

Hi Harv
Thanks for your feedback. If I am so wrong and they can converse in English and disclose info, then why did I get such ridicluous responses to my very simple, easy, direct questions? First response was basically saying everything is confidential across the board. Second response was simply "thank you for your concepts" that was it!
As for my condition and the stem-cell procedure, this area is open and deregulated you cannot make a blanket statement that cells derived from bone marrow cannot be used. In fact, the real doctors and institutions that perform this in the USA's top medical schools (Duke and Nortwestern) use just that.

 

[barbara]

Discouraging language barriers

This may continue to be a mystery because I find it impossible to believe that Dr. Fernandez would write such a ridiculous response to your questions. I am going to e-mail him and see if I get any response because quite frankly, I think he should get the opportunity to respond if for some reason he did not send this. I do know when I asked for him to send something to the forum if he wanted to, I was sent some files concerning several conferences he had attended. It really wasn't something I felt was of interest to forum members so I did not post them.There was absolutely nothing written to me, just the attachments with the conference information. Have you tried calling Dr. dePaz? If his English is good, this might be the best way to go. E-mailing may not be the strong suit for Dr. Fernandez and his colleagues. I just cannot believe that he could have fully understood what you were asking, just as he did not understand what I wanted when I asked him to join the forum and give us information on what he was doing. Maybe, it is best to rule him out based on this inability to communicate with him or find someone who could send an inquiry in Spanish for you.

 

[windless1]

Hi Harv
Thanks for your feedback. If I am so wrong and they can converse in English and disclose info, then why did I get such ridicluous responses to my very simple, easy, direct questions? First response was basically saying everything is confidential across the board. Second response was simply "thank you for your concepts" that was it!
As for my condition and the stem-cell procedure, this area is open and deregulated you cannot make a blanket statement that cells derived from bone marrow cannot be used. In fact, the real doctors and institutions that perform this in the USA's top medical schools (Duke and Nortwestern) use just that.

I don't have a dog in this fight but it sure seems to me you might have a little negative attitude and that might have gotten in your way of getting some answers. Maybe not but I felt real bad vibes as I read your reply to Harv, especially when you said "the real docotrs". I wonder if you do not believe these Doctors that work with stem cell in other countries are real doctors? As I said I don't have a dog in the fight but as I read it hurt. If I am wrong please forgive me and I will mind my own business.. I am not saying you have to believe in stem cell or the doctors but only the doctors you talked to can really tell you why they said what they said. We would only be assuming anyway, nobody has claimed to be mindreaders here only supporters and pioneers of stem cell therapey. Thanks Larry the Windless1

 

[hlichten]

This is a little lengthy, sorry...

I hope I am wrong about the tone of your remarks.

I have never met any of the Argentina crew, don't know them, and have no reason to support them, and, in fact, I am not going to get treatment there.
Anyhow....
First off, I thought that I gave you a good, possible explanation for why you got that reply, didn't I?
Perhaps he is a busy doctor, perhaps he let an assistant reply to his emails, who knows?
As I also said...
I would simply pick up a phone and call Dr. De Paz.
Tell him about the weird reply you got and ask for clarification.
Email is impersonal, and ESPECIALLY when you get a reply totally out of left field, your options are to talk to someone or go elsewhere. Those are the only options you have.

Now...for the second part....
I DID NOT make any "blanket statements" that marrow-based procedures could not be used for your condition.

What I said was if
"you have spoken to Germany and they don't have a treatment, then neither does Dr. Fernandez Vina. Germany and Argentina both use marrow-based cells, the same treatment."

Why would you tell me that I posted something that I didn't post????

Like most of the kind people on this forum, I am not here to give advice, just passing along information as I know it, and I MAY BE TOTALLY WRONG!
I have no idea what treatment is best for your condition, and here is the sad part....
THE DOCTORS that will treat you don't know either!!
Hopefully, they are giving you the benefit of the best advice that they can offer right now.
This forum is called "Stem Cell Pioneers" because that is what we are. We are on the cutting (or bleeding) edge of medical technology, allowing treatment to be performed on us that really "isn't ready for prime time".
If we wait the 2, 3, 5, or 10+ years that it will take for FDA approval of tested methodology here in USA, we either have to suffer those years, or possibly not even live that long.

As for the "real doctors" at "USA's top medical schools (Duke and Nortwestern)", well, you may be right, and maybe not. Yes, there is definitely quackery in terms of the clinics, doctors and products available to us as pioneers. I have already had one non-helpful treatment performed at very high cost early this year.

I have contacted many of the "real doctors" at Northwestern, Texas Heart Institute, etc. personally, and if I could get into one of their clinical trials, then I would have a 50/50 shot at getting actual stem cells and a 50/50 shot of getting an injection of water!! 6 months to 2 years from now they would tell me if I was in the control group and then offer me the real stem cells. I am not a real lucky guy, and I just KNOW that I would be in the control group. I don't have an extra 2 years to wait!!

I won't give advice, but I CERTAINLY will tell people if I think that a doctor should be avoided. I know of several clinics and one doctor to avoid as of now, and I know of a LOT of places I wouldn't go to be treated.

One thing is universal, however, in terms of "real doctors"....
A "real doctor" is a "real doctor" anywhere in the world. A real doctor has a medical degree and cares about giving each patient the best care that he/she can. That's really all that a doctor can do. Even in Thailand, where I was treated and not helped, I had two very good doctors. I am quite confident that they really wanted me to do well, but it just didn't happen for whatever reason.

Ten years from now, these will all be moot points. The medical profession here will likely know the proper treatment with stem cells for most ailments. There will still be worldwide clinics, but they won't be treating Americans because we will have treatment here.

Until then, it is likely a crapshoot, simply rolling the dice and hoping for a cure, or to feel better. The best we can do is to share information so that our educated guesses are as educated as they can be.

I wish you the best of luck,

Harv

Hi Harv
Thanks for your feedback. If I am so wrong and they can converse in English and disclose info, then why did I get such ridicluous responses to my very simple, easy, direct questions? First response was basically saying everything is confidential across the board. Second response was simply "thank you for your concepts" that was it!
As for my condition and the stem-cell procedure, this area is open and deregulated you cannot make a blanket statement that cells derived from bone marrow cannot be used. In fact, the real doctors and institutions that perform this in the USA's top medical schools (Duke and Nortwestern) use just that.

 

[Jeannine]

I have to add my two cents in defense of Dr Fernandez based on my own personal experiences.

Februray 2007 was when I first heard of stem cells even being a possibility for COPD. I heard this from Nassin on A COPD forum. I immediately contacted NAssin for further information. I wrote to Dr Fernandez via email and within hours I received the following information:

Dear Jeaninne: The results of stem cells in enphysema is very diffferent in each patient I suppouse that we can help you.
We need that you send to me one inform of your doctor of your desease and some a blood analysis. I need that you put in contactct wiith our manager in Miami to do all the arreglements of the trip.
Teh procedure is very simple the stme cells from the bone marrow are obeines from the iliac crest thorug a little puncture ander local anestesia and filtered and proceded to separete then from the bone and fatty and reinjected in a peripherical vein The proceure is done in no more one hour and you wil be awake all the procedure

We need beside a ECG and an cardiologic inform
Best Wishes
Roberto

I find it very hard to believe that Dr Fernandez would have treated you this way unless he has been harassed many times since February. My decision not to go to Argentina was based on distance. He is a world renowed physician.

 

[oashman]

Dr Fernandez and the zaelots

Wow, this has really stirred things up.

1. Some people on this forum take things personally. They cannot accept criticism and certainly displace their frustrations. I did not attack nor harrass Dr. Fernandez. I sent an email asking very simple, short questions, that in fact were RECOMMENDED to be asked by this very forum. I then posted his reply which was quite shocking. Forum readers replied that his response was either normal, acceptable, or simply attributed it to language problems. Why attack me for asking simple questions, I do not know. I was called a liar, which is quite offensive, and under normal circumstances, I would not even bother to respond to such attacks. We are all sick and stressed, but lashing out like this is totally unacceptable and in the long run, this will hurt the forum, its members, and so on. I suggest people think twice before venting in writing. Less zeal and more logic would be recommended here.

2. Harv, I cannot explain why you had great communication and even received forms from him and I did not. Obviously you had a good experience and I did not. I am not passing any judgement, all I did was tell the forum about my experience, which I thought was the purpose of this forum.

3. Finally, let me give an opposite example. I just got a call from Dr. Piemer. I sent him an email 3 weeks ago or so and did not get any reply. And then came the phonecall. I found him to be very open, honest, and refreshing! So, there are good and bad experiences in our journey to health.

 

[barbara]

Sometimes there just is no explanation

Ori - You are absolutely right. This forum is for discussion and some discuss more rigorously than others. I am elated that you have received a reply from Dr. Peimer. I have no idea why some response time seems so good in some cases and then the very same clinic or doctor will be slow another time or non committal. I know we look forward to hearing any news you want to give us and believe me, we are all wishing the best for everyone on this forum. We also have an open forum and that means we do not censor or edit except for very dire misconduct which we have had no problems with and do not intend to. Good news for sure Ori and I hope to hear even better news from you soon.

 

[hlichten]

No worries...I wish you the very, very best!!

Doesn't really matter to me anymore about the Argentina communication issue, because I am going to Germany for treatment!

As for Regenecell and your conversation, I am happy that you enjoyed your talk with the doctor. Did he quote any pricing? Is this one of the companies that charges a lot of money? Not sure. What type of cells did he say that they would use for your condition? Would this be in South Africa, India or where?

Let us know,

Harv

Wow, this has really stirred things up.

1. Some people on this forum take things personally. They cannot accept criticism and certainly displace their frustrations. I did not attack nor harrass Dr. Fernandez. I sent an email asking very simple, short questions, that in fact were RECOMMENDED to be asked by this very forum. I then posted his reply which was quite shocking. Forum readers replied that his response was either normal, acceptable, or simply attributed it to language problems. Why attack me for asking simple questions, I do not know. I was called a liar, which is quite offensive, and under normal circumstances, I would not even bother to respond to such attacks. We are all sick and stressed, but lashing out like this is totally unacceptable and in the long run, this will hurt the forum, its members, and so on. I suggest people think twice before venting in writing. Less zeal and more logic would be recommended here.

2. Harv, I cannot explain why you had great communication and even received forms from him and I did not. Obviously you had a good experience and I did not. I am not passing any judgement, all I did was tell the forum about my experience, which I thought was the purpose of this forum.

3. Finally, let me give an opposite example. I just got a call from Dr. Piemer. I sent him an email 3 weeks ago or so and did not get any reply. And then came the phonecall. I found him to be very open, honest, and refreshing! So, there are good and bad experiences in our journey to health.