My father started suffering from PSP July 2011, and still progressing. We've visited John Hopkins Hispital, Mayo Clinic and all they've been able to do is label him with his diagnose; in effect it is most probably PSP.
Very lately I've been been told about Human Groth Hormone Therapy and Omental Transplantation for Neurodegenerative Diseases. I've read the papers publication online and sounds unbelievable.
Has anybody got any experience with these procedures?
Are they being conducted in the USA or Europe?
I'd appreciate if anyone has any information.
Kind regards,
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Hi, sorry don't know anything about the treatments you are talking about. But I'm sure, sooner or later, somebody will try Stem Cell treatment for PSP, that seems to be a magic cure for most things at the moment. Let's hope it's pretty soon!!!
I haven't heard about such method - please send more info/links. My hubby 68yrs has PSP - debut probably 4-5 years ago.
We have given up on all medications, - they just make him feel bad. So we concentrate on vitamins, Rick Simpson oil and, trying to not procrastinate doing positive things.
Perhaps your comment after reading publications online that the results "sound unbelievable" may be closer to current scientific opinion. There is a belief (see the researcher H. Rafael's work) that most degenerative neurological diseases are due primarily to brain vessel ischaemia (artherosclerosis) - that is, poor blood supply. This belief is not held by most medical researchers. While those using omental transplanations in such diseases have claimed limited and mostly transient success in some selected patients, it is not proved in most patients (Such procedures have shown a concerning morbidity and mortality).
Again, Growth hormone therapy has minor benefits (mainly in cognitive/memory improvement). Stem cell therapy has been tried in PSP etc and shown to be of little value. While all things should be tried, the results of such techniques have not resulted in promising permanent symptom relief or cure. Minor benefits in one or two symptoms may occur (often when the disease is in its early phase) but if at this time there were promising results, more researchers would be using the methods (despite the inevitable problem of excessive cost and/or procedural difficulties with some of these techniques).
This may sound quite negative, but we all wait for better acceptable methods and medications to become available to everyone with such diseases.
If others feel I have not given the methods described above a fair review, I would be happy to look at any current research that indicates more comprehensive success in halting the disease course and curing most of the symptoms in most patients.
Did you read Harnando Rafael Cruz paper publiced in 2014?
It cites many successful operations (more than a hundred) along several years in many different Neurodegenerative patients. Do you think he can lie about this so openly? Has any doctor publicly denied he's succes?
I believe that the person I mentioned -H. Rafael - is the same person you have mentioned in your post - namely, Hernando Rafael Cruz. Most of his papers online are in Spanish (Mexican) but the one I quoted was his latest in English. (ncbi.nlm.nih.gov/pmc/articl....
I hope I did not give the impression he was untruthful in his work. The issue of his successes depends on his theories about the cause of degenerative neurological diseases and his subsequent clinical work. (He concludes: "Then, based in our results after omental transplantation, I conclude that the primary cause of NDDs are of microvascular origin, and therefore, these diseases are wrongly classified as neurodegenerative disorders." This is very controversial).
Medicine and science progress by researchers publishing their work. Then it must be repeated in many centres around the world by different researchers and with larger numbers of "samples or patients" to verify the original results. I do not see many other researchers agreeing with his theories (made since 2004, ) or reproducing his results. This may change in the future.
His paper mentions many neurological diseases including Parkinson's. Our interest would be in the latter since it is closest to PSP. He used different "tissues" to help increase neurotransmitters and used omentum - to increase blood supply. He abandoned some methods. Out of 22 cases, 15 remained symptom free for 6 years and the others did not. Then he tried another method on 3 patients where 2 found some benefit but still took Parkinson's medication and the other was able to come off medication.
All this is a matter of interpretation of results on a few subjects. He doesn't raise the question whether these patients may have had a more "vascular Parkinson's" rather than idiopathic Parkinson's. Also he seems to be measuring benefits of only the "motor" problems of Parkinson's and not all the other non-motor symptoms. Lastly, PSP is not Parkinson's and some successes with treatments as described, along with deep brain stimulation and stem cell work, have all been unsuccessful in PSP (according to most published literature).
On a personal note, I understand your concern for your dad's health. As I mentioned before, it's natural to want to try anything that might help slow down this disease and alleviate symptoms. I am full time carer for my wife who has had PSP (Richardson's) for over 6 years and in the latter stages. It's a terrible disease. It's hard to forecast when a clinical breakthrough will occur. Since this type of neurological disease can start some 10-25 years before symptoms appear, the researchers feel that any approach to stopping this disease needs to occur very early in its course.
I wish you all the best as you care for your father.
T.
in reply to
PS.
My link does not seem to work:
But for those interested in this publication, Google the following...
Omental transplantation for neurodegenerative diseases
We have "talked" about this compound and study before. If you type TPI-287 in the search box on the upper right corner you will see the posts and discussion.
I have done the research on this. My husband was able to get into the testing of TPI-287 in Birmingham, AL. We are also doing the study where they do 2 PET scans, an MRI, and a EKG for baseline of the disease. I always look for more info on PSP at least weekly. Thank you Strelley for all your help. You have been wonderful. mthtech
I was looking for information on omental transplantation and found this forum. I have a friend from Peru that was diagnosed with PSP two years ago. He was seen by Dr. Litvan and a Neurologist at Mayo Clinic and both confirmed the diagnosis. My friend will be operated by Dr. Rafael in three weeks approximately. Strelley, you have described exactly what this doctor told my friend. I will definitely post any outcome.
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