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Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

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Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#22
Have you tried hypnosis? I've suffered from face psoriasis for years. Tried every treatment, every ointment, everything I could think of. It frustrated me that my brain was sending signals to over-produce skin cells on my face.

The trick with hypnosis is that you have to be willing to suspend your disbelief with it. If you go in thinking this is B.S. and that you can't be hypnotized, it will not be effective.

I played along and did my best to truly visualize and imagine what I was told to imagine, and within 2 weeks my psoriasis cleared and has not come back in years. Have not continued with hypnosis either. All prescription medication was short-term. Hypnosis has given me the only lasting relief.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#24

I can't help, but I can guarantee you that getting unlicensed medical advice from web developers won't make things better.

It can absolutely make things better. I have received lots of good medical advice in this way, with the philosophy that asking alone can't hurt. However I have also weighed the advice as to possible risk. In addition I've tried lots of things that didn't work for me, like diets, sleep patterns, and even some medications.

IMO in order for quality of care to improve across the board, it's important to acknowledge that there is some signal in the noise in situations like this. Overall I think most of us can trust ourselves. Especially if we also have access to medical professionals, many of whom will in practice shrug and say "it's worth a try if you like."

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#25
The trial you linked (as well as the two other registered trials using mesenchymal stem cells for Ankylosing Spondylitis that I found) are using allogeneic (donor) MSCs. I've been in MSC research/development for 17 years and now cryopreserve them as a service (Forever Labs YCS17). From my experience and knowledge of clinical efforts, allogeneic is limited by immuno-rejection of the MSCs after a few days. That's not to say that they can't provide benefit, but just that their window of action is limited as your body recognizes the donor cells as foreign, and weeds them out (perhaps in AS this is enough). The allogeneic issue is actually why I started banking them. I wanted my own young MSCs available to me later in life.

I'd be curious if you can get the clinic in China to expand your own MSCs. I did some MSC research in Beijing long ago. IMO they are ahead of us in many respects, but they also push the envelope more, and you need to be cautious. That goes for everywhere, actually. Just for different reasons.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#26
post #12
post #4

I have AS as well! Sadly, I have not even researched stem cell treatment so I cannot help with your question. But if I may ask one of my own - what diet have you followed that has helped you with your symptoms. Also, are you taking biological drugs like Humira or Enbrel?

Any idea what Humira costs with an "average" insurance in the US?

Depends on the specialty copay. My Simponi is $30/mo after insurance and it's been that way through multiple jobs.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#27
I didn't see you mention TNF inhibitors. Have you tried Humira, Simponi, Enbrel, etc? Those took me from bed-ridden with a cane to currently training for a half marathon (over the past 8 years of treatment).

(Since you didn't mention it) Have you discussed the treatment with your rheumatologist?

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#28
post #23

You should ask a doctor about his opinions (while there are a great many smart people on HN this isn’t the right medium). Worse, if someone else finds your thread and takes the suggestions here without doing proper research.

When searching use site:.edu for medical research.

From the experience of having to go through huge medical situations for my son and younger sister (Both passed away from cancer), a niece with extremely aggressive MS you need more then a few minute conversation with a doctor.

Doctors are amazing and great but you yourself have to be your own expert. Once you start having more then one doctor you need to not make assumptions. Also make sure you have someone else with you at the doctor meetings. I can't tell you how many times someone I trusted caught something we missed or remembered the doctor conversation better then I did.

a) NEVER assume that the doctor remembers every detail or even major issues about your case.

b) NEVER assume that that doctors talk to each other about your case (Because they never do except when it is time to make a decision and someone will always just defer to the other).

Treat each doctor like they are a silo of expertise and that you make sure you ALWAYS communicate what the other doctors have told you. They only have a few minutes so make sure you have things written down and ready to share. Doctor A said this and Doctor B said this .... Pro-Tip - NEVER tell any doctors diagnosis from other doctors unless they specifically ask you. You might lead them in their thinking and they go down the wrong path and miss something.

c) NEVER assume that they know everything. They don't, but they really do try to be the most informed they can be.

So it is okay to have questions about research or treatments they you have learned about. Never make a suggestion or a diagnosis about yourself it puts the doctors into a bad mood or defensive.

d) Find one of the doctors or Nurse Practitioners (these nurses really normally run the whole show in the office on behalf of the doctor) and tell them you need someone to help you if you have a question.

I have found that when things are very serious that someone will have compassion and go the extra mile for you. Because when you or a loved one are sick you can make a lot of emotional decisions that aren't beneficial. Have someone that you can talk things through so you can make sure your thinking through the facts correctly. They don't need to worry about making decision just to help fact check you or correct something medically that you messed up. Just don't over whelm them with multiple of questions limit it to just a few and something that doesn't take a lot of time.

Praying and hoping that something new will cure you soon.

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