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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?

#31

Post by genemachinery »

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 programming and DNA sequencing in school, using Mu python to simulate MinION. NMSU is using MinION:https://www.youtube.com/watch?v=9tUtC4rcZ3w​

MinION, how it works video:https://www.youtube.com/watch?v=GUb1TZvMWsw Python is the most widely used computer language: https://codewith.mu/​ https://codewith.mu/en/tutorials/1.0/plotter A cheap $1K sequencer, MinION, models immune response to immunotherapy? https://blogs.rstudio.com/tensorflow/posts/2018-01-29-dl-for...

Can we then create a cheaper CRISPR test? To cassify AS? Could a CRISPR test correlate immune response to TCR/CRISPR? https://www.youtube.com/watch?v=jAhjPd4uNFY What works best (chemo vs other) per immune response DNA?

See Mammoth Bio CRISPR paper test. https://mammoth.bio/ NCGR has trained NHS/UK in DNA diagnostics in this internship. https://www.youtube.com/watch?v=9tUtC4rcZ3w http://www.nminbre.org/index.php/2018-inbre-summer-internshi... I would study Machine Learning as it is now used for DNA. https://github.com/kjaisingh/high-school-guide-to-machine-le... I used AI/shotgun sequencing on the US Human Genome Project.

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

#32

Post by moh_maya »

olavgg wrote: post #9

My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no cure and there is not even much effort put into research of a cure. But with a good treatment plan your daily life quality can improve a lot. I have earlier asked my doctor about stem cell treatment, but my doctor says this is very experimental and lacks a good…

Just a tangential headsup for others if they are paying for vimovo (out of pocket, or significant co-pay).

Vimovo is a combination of two generics (naproxen & esomeprezol) delayed release. You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges.

This drug falls into (IMO) ethically grey area in terms of drug pricing & marketing; on the one hand, it is (was?) priced much higher than the individual generics that are part of the combination; on the other hand, it is a convenience.

Horizon pharma, which markets the drug, is not the cleanest of the bunch either [1,2] .. They have a really good understanding of the healthcare market, and know exactly how to game it.

[1] https://www.bloomberg.com/news/features/2018-04-06/when-thes...

[2] https://www.forbes.com/sites/johnlamattina/2018/03/15/physic...

(edit: added 2nd link)

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

#33

Post by nikolatt »

psoriasis_hater wrote: post #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 playe…

Could you please elaborate more on this hypnosis?

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

#34

Post by mnw21cam »

moh_maya wrote: post #32
olavgg wrote: post #9

My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no cure and there is not even much effort put into research of a cure. But with a good treatment plan your daily life quality can improve a lot. I have earlier asked my doctor about stem cell treatment, but my doctor says this is very experimental and lacks a good…

Just a tangential headsup for others if they are paying for vimovo (out of pocket, or significant co-pay). Vimovo is a combination of two generics (naproxen & esomeprezol) delayed release. You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges. This drug falls into (IMO) ethically grey area in terms of drug pricing & marketing; on the one hand, it is (was?) priced much higher tha…

Naproxen (anti-inflammatory) isn't the kind of thing that you want to be on long-term, if it can be avoided, either. I have just been diagnosed with autoimmune psoriatic arthritis. I had three months of Naproxen, which made it possible to walk a couple of miles each day, but they were basically handed out as a "Here, this should take down the inflammation, now wait for your specialist appointment."

Having said that, I'm not sure Naproxen is any worse than the Prednisolone (steroid) tablets I'm now on for two months while I wait for the Methotrexate (nasty cytotoxic) to work.

If there's a stem cell treatment on the horizon, I'd love to hear about it.

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

#35

Post by Axsuul »

I'm sorry you are suffering from this. Unfortunately, I have nothing to offer about stem cells.

Have you tried low-dose naltrexone?

Furthermore, have you ever gone to an infectious disease specialist? Many of these autoimmune conditions can be traced back to latent viral infections which can cause one's immune system to go into overdrive, thereby attacking one's own body. I myself went through this experience.

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

#36

Post by evanagon »

__d__ wrote: post #20

There is a person saying they dramatically reduced their pain eating the carnivore diet at meatheals.com with this condition. Again this is just one person.

Jordan Peterson, a popular professor, and his daughter are following a carnivore diet with self reported good results. Doctors generally do not recommend this diet but it seems to be reducing autoimmune issues for a small group of people. There is speculation that this diet could be working not only because of the elimination of the offending foods, but because of caloric restriction, which has been shown to have good effects on several health conditions.

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

#37

Post by olliej »

mnw21cam wrote: post #34
moh_maya wrote: post #32

Earlier quoted context omitted.

Just a tangential headsup for others if they are paying for vimovo (out of pocket, or significant co-pay). Vimovo is a combination of two generics (naproxen & esomeprezol) delayed release. You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges. This drug falls into (IMO) ethically grey area in terms of drug pricing & marketing; on the one hand, it is (was?) priced much higher tha…

Naproxen (anti-inflammatory) isn't the kind of thing that you want to be on long-term, if it can be avoided, either. I have just been diagnosed with autoimmune psoriatic arthritis. I had three months of Naproxen, which made it possible to walk a couple of miles each day, but they were basically handed out as a "Here, this should take down the inflammation, now wait for your specialist appointment." Having said that,…

Naproxen is vastly superior to prednisone.

The side effects from prednisone are wretched, and long term use is way worse than the impact of naproxen.

I was on nsaids for a decade due to poorly constructed skeleton. I only moved off because I became tolerant to them.

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

#38

Post by dragonwriter »

moh_maya wrote: post #32
olavgg wrote: post #9

My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no cure and there is not even much effort put into research of a cure. But with a good treatment plan your daily life quality can improve a lot. I have earlier asked my doctor about stem cell treatment, but my doctor says this is very experimental and lacks a good…

Just a tangential headsup for others if they are paying for vimovo (out of pocket, or significant co-pay). Vimovo is a combination of two generics (naproxen & esomeprezol) delayed release. You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges. This drug falls into (IMO) ethically grey area in terms of drug pricing & marketing; on the one hand, it is (was?) priced much higher tha…

> You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges.

I don't think you can, specifically:

I don't think naproxen (as distinct from naproxen sodium, which has more rapid effect) is available OTC at all, much less in enteric coated delayed-release capsules.

Esopremazole is available OTC, but AFAICT only in delayed release form, and not in the same dosage used in Vimovo, which is immediate release esopremazole magnesium with a delayed release naproxen core; the esopremazole is to manage the side effects of the naproxen.

So, kitchen-table Vimovo from OTC supplies is not simple.

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

#39

Post by evanagon »

I have other autoimmune disorders and I've looked into getting stem cell treatments outside the U.S because of limitations of what American doctors are willing to do. I found a center in Panama with American trained physicians where you pay out of pocket for treatment (~$25k+ for a week of treatment of umbilical cord stem cells). https://www.cellmedicine.com/ You can apply for treatment on their website and if the doctors believe they can help they will let you know.

When I talked about the tradeoffs of this treatment with traditional American physicians they said they are concerned about stem cells multiplying into the wrong thing. They claim they need more studies showing safety and effectiveness.

I'm undecided if I will go this route, mainly because of cost. In the meantime I'm focusing on dialing in my diet (Wahl's protocol has been mentioned here), meditating (hypnosis has been mentioned here), and intermittent fasting (which has been shown to help improve one's own stem cell generation).

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

#40

Post by yeahboats »

dc1 wrote: post #12
nikolatt wrote: 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?

I don't think my insurance would count as "average" but for another reference point I pay $20/mo and the opus copay assistance brings it to $5.
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