Stem cell treatment for small fiber neuropathy

@sikocesca
Yes, Dr. Ghalili specifically told us he used umbilical cord cells because of our age before he did the procedure. So, he is at least one doctor who uses them in the US.

@lzimms
That’s very interesting
I spoke to someone there and when I asked her about the cells she didn’t have that much knowledge.
She said someone would call me back with more info, I have not heard from anyone else as of yet.
Where was his neuropathy?…
Fran

@sikocesca
The ladies answering calls behind the desk are strictly admins, not medical staff. The clinic is so busy! I’m sure they will get back to you. There are so many people coming there for neuropathy. My husband had taken Repatha (a cholesterol lowering drug) which stripped the myelin sheath off nerve endings all over his body. His knees sent him to a wheelchair. He received the stem cells in his knees. The cells matured in 6 months.

@lzimms
After 6 months he was better?
If I may be so bold and ask what was the $ and I’m sure it’s different for everyone?
Fran

@sikocesca
My husband needed to be detoxed every other day by IV for two weeks as the Repatha damage was throughout his body. At the end of detox he received the stem cells in each knee. I believe it was in the ballpark of $30,O00. People asked why we didn’t just sue the manufacturer of Repatha. I’m sure some may have, but we thought the money was better invested in getting him out of the wheelchair than in hiring an attorney and going through the exhaustion of litigation.
Of course we had motel and flight expenses in addition. This was in the fall of 2024.

@lzimms
Oh yes, we saw the effects toward the end of the six months. His neuropathy had been so bad, he could barely walk an inch or two at a time. Now he hops in our truck and drives where he wants to drive with no limping or pain 🥰

I have dealt with idiopathic small fiber neuropathy for over 10 years. I talked with the stem cell clinic in Panama City, Panama and one clinic in. California. I was able to talk with a physician at both places. Let me say I worked for a very large international pharmaceutical company for 32 years and I know how to do research and to interpret clinical studies. My first question was did they have any studies that have been published in pier reviewed journals showing that stem cell therapy actually works for any of the 100+ different types of neuropathy. Their answers were no. This was a year ago. Also the initial cost was $25,000 for the FIRST treatment, with the suggestion you come back for further treatments! They all have anecdotal reports from patients saying that it worked great. I don’t have the money to just spend $50,000 a year to see if it works.
My industry has done a horrible job in finding a meaningful treatment that addresses the causes of neuropathy and reversing it. All they want to research is how to treat symptoms! I came up with the following saying many years ago: “treat a patient keep a patient. Cure a patient lose a patient”. Far more money is to be made treating diseases than curing them!!!!! My last research came up with nothing that is being looked at and shows promise for treating and reversing neuropathy. Very disheartening.

Information from ChatGPT
https://chatgpt.com/share/6a6c7851-b79c-83ea-9ac5-35556d999096

@lzimms
It was my understanding that the US could not use umbilical cord cells?.?
Fran

@lzimms
Hello

How long was your husband on Rapatha and what were his symptoms?
Has he fully recovered?

Thank you.