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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?

#111

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?

No way I'm risking my health with those class of drugs. All or nothing for me. I do have a rheumatologist but he is not very helpful unfortunately

Biologics are amazing, without them I'm almost immobile and in constant pain.

Being able to work with your doctors is important, I suggest you look for another.

You're not getting better, you won't ever get better, but you can slow the disease down with medication, exercise and diet, in that order.

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

#112
post #111

Earlier quoted context omitted.

No way I'm risking my health with those class of drugs. All or nothing for me. I do have a rheumatologist but he is not very helpful unfortunately

Biologics are amazing, without them I'm almost immobile and in constant pain. Being able to work with your doctors is important, I suggest you look for another. You're not getting better, you won't ever get better, but you can slow the disease down with medication, exercise and diet, in that order.

>You're not getting better, you won't ever get better, but you can slow the disease down with medication, exercise and diet, in that order.

We have a very different view on health and medicine. You might be right but I'll never stop trying.

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

#113

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…

Since I can't edit my original comment I'll just add that people have had a lot of relief from ankylosis spondylitis using these books [1], [2].

Yes it may not cure you fully but it may help you to regain your quality of life like it happened for me or this HNer [3] and thousands of others who thought the had some incurable illness but healed themselves after just reading a simple book.

[1] https://zacalstin.com/2017/06/30/how-i-overcame-ankylosing-s...

[2] http://www.tmswiki.org/forum/threads/big-improvements-in-ank...

[3] https://news.ycombinator.com/item?id=18151061

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

#114
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?

Not in technical terms, but the doctor was head of hip arthroscopy at NYU Langone and an associate prof of medicine at NYU. Very legitimate doctor (I really liked him and think he is a great doctor) and facility in NYC. They never made any false promises to me whatsoever and were transparent about the whole process.

From the site: " This mechanism uses adult autologous stem cells, derived from your own bone marrow. In the procedure, the physician will aspirate these cells from your hip, concentrate them, then deliver them back into your body in the area of damage or injury to aid in natural healing. In all, the process takes less than 45 minutes and the concentration of the cells takes about 12-14 minutes. Because your procedure will utilize a concentrated serum of your own cells, the procedure is considered “autologous point-of-care”. "

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

#115
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?

Now I see that you're OP and looking through the comments, I just want to say I feel for you. I am 26, when I was in high school I was highly active with a lot of exercise. Due to the peripheral manifestations of my AS I can't really exercise much any more without inflaming my arm or my knee. I think some other posters here raise great points about diet and exercise (There's been a lot of talk about starch and AS, see kickas.org, google Specific-carbohydrate diet, look up the work of dr. Alan Ebringer from King's college london).

Also, you may find articles by Dr. James T Rosenbaum interesting: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3204318/ . I'm not a doctor but experimenting with diet and trying to be good to your gut I have found to be helpful.

I have a whole bunch more thoughts on our disease, but I just want to say it can be rough, I'm sorry you're going through this, and you are not alone friend.

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

#116
I had never heard of AS but for what it's worth I think that we are all facing a host of 21st century autoimmune diseases that may be caused (in part) by our diet and environmental factors.

Although my situation in no way compares to yours, I think I may have a condition called leaky gut after a lifetime of eating legumes, nightshades and specifically proteins like gluten which are part of the lectin family (or something along those lines - I'm not a doctor). Also beer, lots of beer, which certainly didn't help. It may be exacerbated by molecules in genetically modified foods that normally don't appear in our diet, and by pesticides/herbicides like glyphosate that wreak havoc on our gut flora. These are present in large quantities in processed foods high in soy and corn, especially fast food. IMHO this is why so many young people are getting type II diabetes and obesity.

I just did a quick search for the overlap between our conditions and stumbled onto this page:

http://stopautoimmunity.com/en/2016/11/20/ankylosing-spondyl...

I highly recommend glutamine. It repairs the single-cell lining of the intestine to prevent microbes from crossing over into the body cavity. In my case I've been suffering from acne for the last couple of years (I'm 41), severe fatigue and joint pain from heavy gym sessions. I've only taken glutamine a couple of days and my acne has begun clearing up.

I'm wondering if autoimmune diseases (like arthritis) might be caused in part by our immune systems constantly fighting microbes anywhere our cells have contact with the outside world, so for example mucus membranes, our digestive tracts and our joints. Any supplement that strengthens those like glucosamine/chondroitin MIGHT have a therapeutic effect on these conditions.

Also CBD oil can work for inflammation, but you might want to wait until you're older to try it as the last thing you need at your age is dependency on a mood-altering substance. Also there has been little literature about the longterm benefits or side effects of it as it has been illegal in the US for so long. I really view it as a remedy for older folks.

If it was me, I would try holistic/lifestyle changes such as avoiding foods that cause inflammation, staying away from opioids, strengthening bone and connective tissue (see people like Mike O'Hearn's videos on YouTube), etc etc before trying an experimental treatment like stem cell therapy. Just remember that western medicine can be out of touch when it comes to complex systems and holistic effects. But, I am optimistic that great progress within these large search spaces will happen in the next 5-10 years from advances in AI and having big data to train on, if you can maintain your health until then. It sounds like you are on the right path with your diet. Best of luck to you!

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

#117
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.

Sure.

https://www.ncbi.nlm.nih.gov/pubmed/29273086 https://www.ncbi.nlm.nih.gov/pubmed/30149650

It definitely needs more study.

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

#119
Another adjuvant therapy to consider is the 3-5 day fast or fasting mimicking diet. https://www.foundmyfitness.com/episodes/valter-longo-2

Essentially, during the fast, the body cannibalizes a significant percentage 30%? (IIRC) of immune cells. Once the fast completes, the refeeding cycle regenerates brand new cells from stem cells which results in resetting auto-immune symptoms.

For serious cases of necessary therapy, they do this on a 25 day (normal) /5 (fast) cycle.

Reviews say that the book that Dr Valter Longo promotes is a big ad for his fasting-mimicking diet kit, but they have a brief screen shot of the fasting-mimicking diet protocol which is:

  day 1 - 1100 calories (11/46/43% protein/fat/carb)
  day 2-5 - 720 calories (9/44/47% protein/fat/carb) macronutrient breakdown.
This works out to: day 1 - 30g protein, 56g fat, 118g carb day 2-5 - 16g protein, 35g fat, 85g carb

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

#120
post #115

Earlier quoted context omitted.

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

Now I see that you're OP and looking through the comments, I just want to say I feel for you. I am 26, when I was in high school I was highly active with a lot of exercise. Due to the peripheral manifestations of my AS I can't really exercise much any more without inflaming my arm or my knee. I think some other posters here raise great points about diet and exercise (There's been a lot of talk about starch and AS, se…

Thanks for you kind words and support. I'm sorry you have to share this experience too. I know there are many people suffering all sorts of ailments, many much much worse than AS which I remind myself of when I'm down. That said I don't need to tell you how frustrating this can be. The hope of a cure sustains my generally positive outlook on life. I hope for all of us that we make massive leaps in understanding our immune system and genetic makeup better in the coming years.

I have been following all the research and advice you mention. I'm absolutely positive that we are only scratching the surface (Dr Ebringer etc). It seems that the link between klebsiella and AS may be on the right path but not a totally accurate diagnosis. Based on sequencing my own biome (i used Viome) and some reading I have done it is more probable that there are a whole host of bacteria that interplay to create an inflammatory reaction. I'm almost certain based on some papers I've read that there is also a corruption in the stem cells that create the immune system white blood cells themselves which would render autologous transfusions useless. This is both exciting and daunting considering the risks of side effects like graft-versus-host disease which sounds truly terrifying. This is why I'm so apprehensive to go for experimental treatment. Life can suck during a flare-up (which I've managed to dampen with diet) but overall it could definitely get and stay worse. Hearing anecdotal evidence of people essentially being in full remission on the other hand has piqued my interest. It truly is a catch-22.

I would be curious to hear more about your thoughts on AS.

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