Stem cells in dysautonomia pipeline....

[sillysocks84]

@Groggy Doggy I hope you have continued improvements. Please keep us all up to date if that's OK with you.

 

[Naomi40]

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I had one adipose stem cell treatment, for about $6k, in May. My own fat was harvested, placed in a machine to filter out the stem cells, which amounted to just one injection. I did initially feel some slight improvements with sleep, pain, and flexibility I could see visible positive differences in my appearance ( I looked vibrant and healthy). I was told it could take up to one year, post injection, to derive the full benefit. I was ill for about 2 years before the stem cell treatment. Since I don't know what my health would be like today without having the procedure a few months ago, its hard to say if it was worth it. I felt the stem cell treatment was the lowest risk option, since I was injected with my own 'medicine'. I was concerned that, some of the drugs that people are taking to help with ME/CFS could potentially harm me in the long run. I've always been very sensitive to prescription drugs and typically suffer from their side effects I feel we just don't fully understand the risk vs benefit of the trial drugs without more research. I opted to start with one stem cell treatment, wait one year, and then decide what the next course of action is. I hope I didn't offend anyone in my posting.

I am interested in knowing how you are progressing after the stem cell therapy. I'm considering the TVAM and/or Stem Cell therapy with Dr. Arata for my daughter

 

[Groggy Doggy]

I am interested in knowing how you are progressing after the stem cell therapy. I'm considering the TVAM and/or Stem Cell therapy with Dr. Arata for my daughter

Hi @Naomi40, I am sorry for the long delay in replying. My own personal opinion, is that one adipose stem cell treatment will not be enough for ME. And it's easy for a US doctor to take some fat and send it to a lab in the US so that the fat stem cells can be duplicated. But the US laws are old and backwards. It's upsetting to think that the FDA owns my own fat ( as soon as it lands inside of a laboratory that intends to multiply it). So the US lab (with your fat) can duplicate it legally, but its considered as an experiemental drug and under jurisdiction of the FDA. So then you need the lab send your fat stem cells to a clinic outside of the US, so that you can get an injection.

When I last researched this a few months ago, my only option was to file a request with the FDA for "compassionate use" so that I could get my stem cells from a US lab sent to my US doctor. But this option is not cheap either.

In summary, I would not waste your money on a one time $5-6k in office treatment (remove fat, derive stem cells, and get it injected back in same session)

Depending on the severity of illness and your financial options, I would recommend researching the cost of leaving the country to get multiple treatments (outside of US to take out fat, send to a lab, get injection) vs US doctor remove fat and send to US lab, then get US lab to send outside of country. You could also see if a doctor could fill out the FDA compassionate form, to see if you can stay in the US to get treatments.

The FDA and Big Pharm are more powerful that the NRA, so its a fight to get any help for our illness even with no FDA approved treatments for it. Many people are too ill (different diagnosis) to travel outside of the US for treatments, and are essentially waiting to die until our Congress stands up to the lobbyists that pay them.

Regarding TVAM, I am not familiar with it.

If you are interested in exploring other ME treatments, please feel free to PM me.

Thank You,

GD