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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?

#101

Post by dustinlakin »

rorykoehler wrote: post #95
dustinlakin wrote: post #78

Earlier quoted context omitted.

I also have AS and started with NSAIDs, and would advise you be very careful with your stomach. I was taking indomethacin that made the stiffness slightly manageable but acid reflux symptoms became a serious issue. After switching to Humira I have no more active pain or stiffness, with only some minor uveitis (in an eye that has many other issues). I wish someone would warned me earlier because my stomach has never b…

I don't take drugs. I will take an immune regulating cure but not a immuno-suppressant like Humira. NSAIDs class of drugs are not good for long term treatment. They will physically destroy any semblance of health you may have.

I am glad to hear that exercise and diet works well for you, but there are some of us that aren't so lucky. I have been through four different rheumatologists, and plenty of non-drug related therapy attempts. I even consider myself lucky that Humira has been so helpful.

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

#102

Post by LauraLaura »

LauraLaura wrote: post #100

Hi. I have AS and went from 9.5/10 to 0.1/10 with diet. Why not just continue with the diet? It has zero negative side effects and is free. Would love to learn what you have done to change your diet. Maybe I can help you with the final tweaks.

Btw I don't check this comment board often -- if you want to get in touch send me a DM on instagram @wanderlustandcompass But rest assured that there is light at the end of the tunnel. I never thought I'd be able to walk without pain again. Now I run 10k a week and do weights at the gym and even do kungfu. Stay motivated and I'm sure you will get better :)

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

#103

Post by rubicon33 »

LauraLaura wrote: post #100

Hi. I have AS and went from 9.5/10 to 0.1/10 with diet. Why not just continue with the diet? It has zero negative side effects and is free. Would love to learn what you have done to change your diet. Maybe I can help you with the final tweaks.

Would you mind detailing your diet changes?

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

#104

Post by lancesells »

I don't know about stem cell treatments but for anyone with an auto-immune condition I would recommend trying the AIP diet. It was a game changer for me and my health improved rather fast after starting it. Anecdotally I've heard an adult stomach heals in around two years so I'm sticking to a strict AIP diet for at least that long before adding in other foods.

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

#105

Post by rorykoehler »

dustinlakin wrote: post #101
rorykoehler wrote: post #95

Earlier quoted context omitted.

I don't take drugs. I will take an immune regulating cure but not a immuno-suppressant like Humira. NSAIDs class of drugs are not good for long term treatment. They will physically destroy any semblance of health you may have.

I am glad to hear that exercise and diet works well for you, but there are some of us that aren't so lucky. I have been through four different rheumatologists, and plenty of non-drug related therapy attempts. I even consider myself lucky that Humira has been so helpful.

I can totally understand your choices though I think we can both agree that the current drug choices are very primitive due to their systemic efficacy. There are some interesting mouse studies that are investigating methods of targeted secretion of biologic drugs using CRISPR (modified viruses?) at the site of inflammation [1]. I'm hoping these progress to human trials soon.

[1] https://www.technologynetworks.com/genomics/news/a-crispr-ba...

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

#106

Post by rorykoehler »

Axsuul wrote: post #57
notabee wrote: post #47

Earlier quoted context omitted.

I would like to hear more about resources regarding the latent viral infection theory. I've been helped a bit by low dose naltrexone in the past and I've been reading a bit about things like vagus nerve infections, but if you've been through treatment I'd like to know what your experience was like, if you don't mind.

I've been dealing with Hashimoto's symptoms for more than 5 years now (and possibly Addison's). All my thyroid and adrenal hormones were completely out of whack and I suffered greatly. Went on various combinations of hormone replacement, tried various diets, spent tranches of money on supplements and alternative therapies, and have seen close to about 20 different specialists. Everything I've tried at best gave me cl…

Thanks for this. I also have HHV-6 outbreaks on occasion. I will definitely investigate further. I have reached out to my rheumatologist for an infectious disease specialist referral. I'm curious how did you find yours? Are their specific terms I should google apart from infectious disease specialist?

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

#107

Post by rorykoehler »

markkat wrote: post #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 t…

Do you have any links to studies re immuno-rejection? I've heard it mentioned but I've also heard the opposite from the likes of the stem cell clinic in Panama.

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

#108

Post by rorykoehler »

wpasc wrote: post #29

I have Ankylosing Spondylitis with peripheral manifestations in knee, elbow. I did an autologous stem cell injection into my peripheral joints with no effect.

Do you know what protocol for cell preparation and administration was followed?

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

#109

Post by rorykoehler »

genemachinery wrote: post #31

Many new immune system tools are being developed. MinION is now used for T-Cell and B-Cell characterization by reading immune response to breast cancer. Can you create a AS model? https://www.biorxiv.org/content/biorxiv/early/2018/09/24/424... I can send a model, Python DNA Plotter, of an Oxford nanopore DNA sequencer(MinION), shows what a Mu DNA plotter simulation may look like. Students can now learn python program…

Thanks for all the links and info. I will spend some time exploring them. Much appreciated

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

#110

Post by superasn »

Hi, I know this isn't what you're asking for but after reading that it's "seriously reducing my quality of life." I would suggest you read "The Divided Mind" by Dr. John Sarno.

It's just a book and maybe it can help you get better fast ( you can even find the pdf on Google too I'm sure if you aren't ready to spend anything). The best part is reading the book alone can help restore the quality of your life as long as you keep an open mind. I didn't suffer from the same condition as you but I've been in a similar situation and this book changed my life (and another HNer who I recommend it too).

Also if you're suffering from back pain please also lookup "Healing back pain" by the same author.

Sorry for the unsolicited advice but I'm just trying to be helpful having been in a similar situation once. Try it before going for something so radical first. The only thing you have to lose is spending some time reading the book.

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