karl wagner
New member
I'm a new menber and have read most of the lung related posts but have not found any directly related to pulmonary hypertension results. Has anyone been treated specificaly for pph and how are you doing.
pph
- Thread starter karl wagner
- Start date
Pulmonary hypertension
Karl - If you do not get some response here from patients, I would recommend that you might want to consult with some stem cell doctors to see what results they are getting for pulmonary hypertension. Most consultations are free. If you need more info on how to go about this, please e-mail me from the forum and I will be happy to reply. Welcome to our forum by the way.
Karl - If you do not get some response here from patients, I would recommend that you might want to consult with some stem cell doctors to see what results they are getting for pulmonary hypertension. Most consultations are free. If you need more info on how to go about this, please e-mail me from the forum and I will be happy to reply. Welcome to our forum by the way.
Erika's Mom
New member
Pulmonary Hypertension
Karl,
Hi. I am the mom of a 29 year old daughter with mental disability + cardiomyopathy and secondary ph, and I have been researching and searching for a possible stem cell treatment for her. Her condition is primarily cardiac, with the ph as an unfortunate side effect, so that defines my search, but I have found some leads specific to PH which I will share with you.
1. Dr. Shalin Thakore - Ahmedagad, Gujarat, India - Krishna Heart & Super Speciality Center - using autologous bone marrow cells for PPH and cardiomyopathy. You can email him at sthakore@sify.com He has been very good at answering my email questions. If you google his name you will find some articles.
2. Dr. Michael Kutryk, St. Michael's Hospital, Toronto, Canada is doing some clinical trials for PH. Info contact is Julie Saccone - sacconej@smh.toronto.on.ca They told me they would not treat Erika, nor would she qualify for their clinical trials, but your case might be different.
3. Dr. Zannos Grekos - Florida - treating primarily heart disease patients with Theravitae blood derived stem cells, but spoke to me about also treating PH (since Erika has both). He was working with Bangkok Hospital, but is more recently doing his own treatments in the Dominican Republic. His website is www.regenocyte.com.
All three of these are autologous adult stem cells - not cord blood cells, which I don't know much about.
Good Luck !
Marcia
Karl,
Hi. I am the mom of a 29 year old daughter with mental disability + cardiomyopathy and secondary ph, and I have been researching and searching for a possible stem cell treatment for her. Her condition is primarily cardiac, with the ph as an unfortunate side effect, so that defines my search, but I have found some leads specific to PH which I will share with you.
1. Dr. Shalin Thakore - Ahmedagad, Gujarat, India - Krishna Heart & Super Speciality Center - using autologous bone marrow cells for PPH and cardiomyopathy. You can email him at sthakore@sify.com He has been very good at answering my email questions. If you google his name you will find some articles.
2. Dr. Michael Kutryk, St. Michael's Hospital, Toronto, Canada is doing some clinical trials for PH. Info contact is Julie Saccone - sacconej@smh.toronto.on.ca They told me they would not treat Erika, nor would she qualify for their clinical trials, but your case might be different.
3. Dr. Zannos Grekos - Florida - treating primarily heart disease patients with Theravitae blood derived stem cells, but spoke to me about also treating PH (since Erika has both). He was working with Bangkok Hospital, but is more recently doing his own treatments in the Dominican Republic. His website is www.regenocyte.com.
All three of these are autologous adult stem cells - not cord blood cells, which I don't know much about.
Good Luck !
Marcia
PPH Treatment
Hi again Karl, After reading Erika's mom's post, I did check with the company (SCB) where I got my treatment from to see if they are treating PPH. I just received an e-mail from them and they are. They use umbilical cord stem cells. They are located in San Diego (treatment is in Mexico) and the Cayman Islands. Dr. Peimer is a member of our forum and you may want to check with him also. I will be happy to give you more information if you want. Just let me know. I do know that Dr. Grekos has been very unresponsive to some members of this forum and very responsive to others. I have no idea why it is this way, but it is. You may want to consider the location of a clinic as well as the possibility of needing a booster. There is another good company in Germany, so there are lots of places that you can contact to find out what successes they are having with PPH.
Hi again Karl, After reading Erika's mom's post, I did check with the company (SCB) where I got my treatment from to see if they are treating PPH. I just received an e-mail from them and they are. They use umbilical cord stem cells. They are located in San Diego (treatment is in Mexico) and the Cayman Islands. Dr. Peimer is a member of our forum and you may want to check with him also. I will be happy to give you more information if you want. Just let me know. I do know that Dr. Grekos has been very unresponsive to some members of this forum and very responsive to others. I have no idea why it is this way, but it is. You may want to consider the location of a clinic as well as the possibility of needing a booster. There is another good company in Germany, so there are lots of places that you can contact to find out what successes they are having with PPH.
hi barbara
my name is Silvia i've 27 old and i wrote from italy.
i've an idiopathic pulmonary hypertension with even some hearth problem
My doctors in italy give no chance, no transplant is possible for me.
i've also kidney failure and i'm dyalisis.
i'm hopeless because my healt and breath get worse every day, and now i'm in a very critical situation.
i'm searching if it's possible for me to have a stem cell treatment. in italy there aren't and my doctor just wrote to Dr. Kutrik in Canada but without response.
i'm also consider Dr. Shalin Thakore in India, but i don't know if this doctor is really appreciated..he seem to have no scientific reference in the scientic world.
I read you've also some other input like in germany..could you give me more info on dutch stem cell centre.
i'm very grateful to you for any kind of reply.
sorry for my bad english.
ciao from italy.
my name is Silvia i've 27 old and i wrote from italy.
i've an idiopathic pulmonary hypertension with even some hearth problem
My doctors in italy give no chance, no transplant is possible for me.
i've also kidney failure and i'm dyalisis.
i'm hopeless because my healt and breath get worse every day, and now i'm in a very critical situation.
i'm searching if it's possible for me to have a stem cell treatment. in italy there aren't and my doctor just wrote to Dr. Kutrik in Canada but without response.
i'm also consider Dr. Shalin Thakore in India, but i don't know if this doctor is really appreciated..he seem to have no scientific reference in the scientic world.
I read you've also some other input like in germany..could you give me more info on dutch stem cell centre.
i'm very grateful to you for any kind of reply.
sorry for my bad english.
ciao from italy.
Welcome to our forum. I would try some alternative remedies for the very near future. I just posted something on medicinal mushrooms and the cordyceps mushroom has an excellent reputation not only for lungs, but for kidney failure. I will also send you the contact information via a private message for several clinics that might be a possibility for you - Germany, Turkey, India. The doctor you mentioned does seem to be gaining a reputation for helping with your condition and you may want to seriously research what he is doing before you count him out. Are there other patients you could speak to that have had successful treatment with him? Is he charging astronomical fees? What does his treatment consist of? How many successes has he had when patients had renal failure as well? These are just a few of the questions to be considered and I am sure you can think of more. I hope you will continue to post what you find out and do not give up.
many many thanx barbara
i'm very gratefull to you for the all the kind words and suggestions.
few minutes ago i phoned to germany's x-cell centre for pulmonary hypertension with some right ventricolar failure.
sadly i had to say that they never treated pulmonary hypertension and so they will not treat my case.
i wrote also an email to regenecell and i received this reply:
"Dear Daniele
Thank you for your interest in the Regenecell stem cell therapy program.
We only treat in the Seychelles and India and it sounds like the patient cannot travel by air. I suggest that you speak to your physician about a stem cell transfusion using the patient's own stem cells, which has shown some responses in cardiac failure.
If the patient is able to travel to the Seychelles treatment can be performed in April and we will be happy to oblige.
Kind regards.
Dr. Jeff Peimer"
i'm very very sad now..
karl i read you have pulmonart hypertension, have you just contacted germany?
what can i do now? it's seem that only dr. Shalin Thakore have a chance of cure for me..but i don't have any reference.
i'm very gratefull to you for the all the kind words and suggestions.
few minutes ago i phoned to germany's x-cell centre for pulmonary hypertension with some right ventricolar failure.
sadly i had to say that they never treated pulmonary hypertension and so they will not treat my case.
i wrote also an email to regenecell and i received this reply:
"Dear Daniele
Thank you for your interest in the Regenecell stem cell therapy program.
We only treat in the Seychelles and India and it sounds like the patient cannot travel by air. I suggest that you speak to your physician about a stem cell transfusion using the patient's own stem cells, which has shown some responses in cardiac failure.
If the patient is able to travel to the Seychelles treatment can be performed in April and we will be happy to oblige.
Kind regards.
Dr. Jeff Peimer"
i'm very very sad now..
karl i read you have pulmonart hypertension, have you just contacted germany?
what can i do now? it's seem that only dr. Shalin Thakore have a chance of cure for me..but i don't have any reference.
Dangilio - I missed this post earlier
Dangilio - I did not see this post when I replied to your other post inquiring about Turkey. I can see you have been busy researching. Turkey is treating your condition as far as I know. Harv, will verify the German info you received just to make sure. Do not give up hope. That is the worst thing you can do. Could you travel to Turkey? If you have any problems receiving information from SCB for the Turkey facility, let me know and I will see if I can expedite it for you. Please, keep us posted as to what you find out. We all do care.
Dangilio - I did not see this post when I replied to your other post inquiring about Turkey. I can see you have been busy researching. Turkey is treating your condition as far as I know. Harv, will verify the German info you received just to make sure. Do not give up hope. That is the worst thing you can do. Could you travel to Turkey? If you have any problems receiving information from SCB for the Turkey facility, let me know and I will see if I can expedite it for you. Please, keep us posted as to what you find out. We all do care.
harv and barbara
you are soooo lovely..i m'very touched..
really you make my tears go down on my keybord.
you give me the strength to believe in something that now appear really like an impossible dream.
harv i'm grateful to you for any info you could grasp from x-cell usa.
barbara i don't find the contact for turkey, i ask even to alley.
i just visited http://stemcellbiotherapy.com/ but i can't find any kind of mail adress or phone number.
if you have some kind of information on how could i contact istanbul let me know please..i'm just so pleased for the contact you give me..many thanx again.
ciao ,ciao.
you are soooo lovely..i m'very touched..
really you make my tears go down on my keybord.
you give me the strength to believe in something that now appear really like an impossible dream.
harv i'm grateful to you for any info you could grasp from x-cell usa.
barbara i don't find the contact for turkey, i ask even to alley.
i just visited http://stemcellbiotherapy.com/ but i can't find any kind of mail adress or phone number.
if you have some kind of information on how could i contact istanbul let me know please..i'm just so pleased for the contact you give me..many thanx again.
ciao ,ciao.
Turkey talk
There is no phone number you can call in Turkey. You would need to contact them in the U.S. at (818)597-9111 or by fax at (818)597-9119. I would ask for Cathy and tell her you are a Pioneer member as members do get a discount. You can also request more information online if you prefer. Their main headquarters is in San Diego, California. I hope this helps.
There is no phone number you can call in Turkey. You would need to contact them in the U.S. at (818)597-9111 or by fax at (818)597-9119. I would ask for Cathy and tell her you are a Pioneer member as members do get a discount. You can also request more information online if you prefer. Their main headquarters is in San Diego, California. I hope this helps.
many thanx again harv, you are so kind. i'm the Silvia's brother.As for getting an IV treatment via marrow, he said that they would do it, but would not give any hope for success.
the fact is that my sister have no chance.Now that i'm writing she's very tired. the situation is getting worse quickly..we just have no hope..so we don't want any warranty of success..but possibly only one chance.
i write also an email today to jolivar@xcell-center.com immediately after i spoke with him about my sister but he don't reply till now..he say me, as just write before by my sister, that in germany don't do this cure with stem cell..they never tried it.he say me to send him the clinical situation of Silvia and he will try to spoke with the doctors.but he anticipated me that don't do this treatment..so we are very very sad....germany is very near to us and this travel would not be so bad.
barbara many thanx again..i try to phone in usa right now.
You must give it your all
Some may not agree with me, but none of us should expect any guarantee of success. That is why we are Pioneers. I think you are justified in wanting to seek out all options. I know I would do the very same thing. I just don't like to take no for an answer. We are all different and at this time, there is no way to predict the outcome of treatment. If you have any problem getting Cathy, please let me know. She will be honest with you too.
Some may not agree with me, but none of us should expect any guarantee of success. That is why we are Pioneers. I think you are justified in wanting to seek out all options. I know I would do the very same thing. I just don't like to take no for an answer. We are all different and at this time, there is no way to predict the outcome of treatment. If you have any problem getting Cathy, please let me know. She will be honest with you too.
thx again harv..you are an angel.
now i'm in skype with regenecell
..they say me that in mombay maybe they could try cure my sister..even if they never try stemm cell in pulmonary hipertension.
they use 4 injections of 2 million umbilical cord cells per day. Two cell types are used: mesenchymal and CD34+
for cardiac problem and even kidney..but the main problem for us is the pulmonary and cardiac problem
he say me that Some patients with left sided cardiac failure have had good results.
now i'm in skype with regenecell
..they say me that in mombay maybe they could try cure my sister..even if they never try stemm cell in pulmonary hipertension.
they use 4 injections of 2 million umbilical cord cells per day. Two cell types are used: mesenchymal and CD34+
for cardiac problem and even kidney..but the main problem for us is the pulmonary and cardiac problem
he say me that Some patients with left sided cardiac failure have had good results.
Did you check with SCB also? They do have someone who speaks Italian in their office and I was told that they have done treatment for this. You need to make sure that you understand that stem cells may not work like Harv says. On the other hand, you must follow all avenues and I can understand that. Dr. Peimer from Regenecell did mention that you did not think your sister could travel too great a distance. I think he is correct in cautioning you that this would be a major trip for her. In Italy there is a lot of training in HBOT. Have you explored that avenue also? There are some pretty amazing things going on with HBOT also.
travel in a similar condition of my sister
this morning i will contact Jay (the USA rep for Xcell-Center) and SCB. and i will update you..i never heard nothing on HBOT and i start some little search today. what i found is very interesting, because i read that hbot seem to prolong life's expataction on some terminal patient witch vascular problem. the problem is that seem to be effective in the long period and with many session for week and we don't have any HBOT center near us. (silvia 3 time a week make also dyalisis).
Regenecell yesterday seem to be very caution for the travel, and i know that it could be a very dangerous fly for Mombay. i would like to know if someone in this forum have had such a travel in a similar condition of my sister. when she is sitting she bring 4/5 lt with saturation 96/98. she make very fatigue when she walk (even from room to room of our home..but i think we could use buggy for the travel)
another time i would to infinitely thanx your suggestions and help
ciao.
this morning i will contact Jay (the USA rep for Xcell-Center) and SCB. and i will update you..i never heard nothing on HBOT and i start some little search today. what i found is very interesting, because i read that hbot seem to prolong life's expataction on some terminal patient witch vascular problem. the problem is that seem to be effective in the long period and with many session for week and we don't have any HBOT center near us. (silvia 3 time a week make also dyalisis).
Regenecell yesterday seem to be very caution for the travel, and i know that it could be a very dangerous fly for Mombay. i would like to know if someone in this forum have had such a travel in a similar condition of my sister. when she is sitting she bring 4/5 lt with saturation 96/98. she make very fatigue when she walk (even from room to room of our home..but i think we could use buggy for the travel)
another time i would to infinitely thanx your suggestions and help
ciao.
I hope you get answers today.
Only her doctor would probably know if she could endure such a trip. There have been others on high lpms of oxygen that have traveled, but none of us are doctors on here, so it would be difficult to assess your sister's ability to make such a trip. I am sorry that there is no HBOT clinic near you because that type of treatment could prove to make her healthier to endure a trip to get stem cell therapy if it is deemed appropriate. I hope you get some answers today.
Only her doctor would probably know if she could endure such a trip. There have been others on high lpms of oxygen that have traveled, but none of us are doctors on here, so it would be difficult to assess your sister's ability to make such a trip. I am sorry that there is no HBOT clinic near you because that type of treatment could prove to make her healthier to endure a trip to get stem cell therapy if it is deemed appropriate. I hope you get some answers today.
karl wagner
New member
silvia
Please try to get some viagra or ravatio . I was also exhausted all the time with my pph and this helped alot. Also the steroids helped for short term , mabe long enough to get you treated. Based on my studies i think you should get to xcell center as fast as possible.Also a channel blocker like cartaziam will help. best of luck.
Please try to get some viagra or ravatio . I was also exhausted all the time with my pph and this helped alot. Also the steroids helped for short term , mabe long enough to get you treated. Based on my studies i think you should get to xcell center as fast as possible.Also a channel blocker like cartaziam will help. best of luck.
thank karl
Revatio is tha last medicine that my doctor prescribed to me.sadly without any results. Tuesday i go to hospital to implant catheter for flolan.Xcell germany say to me that never treated pulmonary hypertension.. i don't understand what you say to me about xcell, sorry but my english is not very well.
ciao.
hi karl, thank for the replysilvia
Please try to get some viagra or ravatio . I was also exhausted all the time with my pph and this helped alot. Also the steroids helped for short term , mabe long enough to get you treated. Based on my studies i think you should get to xcell center as fast as possible.Also a channel blocker like cartaziam will help. best of luck.
Revatio is tha last medicine that my doctor prescribed to me.sadly without any results. Tuesday i go to hospital to implant catheter for flolan.Xcell germany say to me that never treated pulmonary hypertension.. i don't understand what you say to me about xcell, sorry but my english is not very well.
ciao.
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pdf trial result
i've made many search with the help of some doctor here, and i found some real trial on human with epc stem cell with very promising results.
dr. kutryk of the toronto's university and dr Xing-Xiang Wang in china.
i've the pdf pubblications of this two trial result (a very important researcher that work on pah disease send to me this pdf file that it's not avaible for normal user. i don't know where can i put this authoritative pdf file ("pubmed" and "Journal of the American College of Cardiology" pubblications) if someone have an ftp site a will share this with you..or coul i send you via email.
harv, could you send this pdf to xcell, seem that you've good contact with xcell..maybe they would consider it.
ciao a tutti.
now i understand what you say me, sorry...Summary:
XCell-Center has never treated pulmonary hypertension because they do not believe that it currently can be cured or helped with stem cells.
i've made many search with the help of some doctor here, and i found some real trial on human with epc stem cell with very promising results.
dr. kutryk of the toronto's university and dr Xing-Xiang Wang in china.
i've the pdf pubblications of this two trial result (a very important researcher that work on pah disease send to me this pdf file that it's not avaible for normal user. i don't know where can i put this authoritative pdf file ("pubmed" and "Journal of the American College of Cardiology" pubblications) if someone have an ftp site a will share this with you..or coul i send you via email.
harv, could you send this pdf to xcell, seem that you've good contact with xcell..maybe they would consider it.
ciao a tutti.
Why not try it?
I'm not sure what is actually going on with you Dangilio or Sergio. You did say you would be in touch with X-cell and also SCB. I even told you that someone spoke Italian at SCB. I think the results may be promising with stem cells and if I were you and had the money, I would go for it. I believe that X-cell may want to err on the side of caution since they have never tried this, but all of these treatments have to start somewhere. If they are not willing, look elsewhere. They have never done a treatment for COPD either and yet I am told they are willing. How will they know if it works or not if they don't get a patient willing to try it? I had no idea whether the treatment I got would help me or not, but it was a risk I was willing to take. I didn't feel at all worried about any health issue, the risk for me was entirely monetary. If you do not have that in the equation, I think that the answer here is a no brainer. You may need to get someone to translate that for you.
I'm not sure what is actually going on with you Dangilio or Sergio. You did say you would be in touch with X-cell and also SCB. I even told you that someone spoke Italian at SCB. I think the results may be promising with stem cells and if I were you and had the money, I would go for it. I believe that X-cell may want to err on the side of caution since they have never tried this, but all of these treatments have to start somewhere. If they are not willing, look elsewhere. They have never done a treatment for COPD either and yet I am told they are willing. How will they know if it works or not if they don't get a patient willing to try it? I had no idea whether the treatment I got would help me or not, but it was a risk I was willing to take. I didn't feel at all worried about any health issue, the risk for me was entirely monetary. If you do not have that in the equation, I think that the answer here is a no brainer. You may need to get someone to translate that for you.