
Ask HN: Has anyone undergone stem cell treatment for auto-immune disease? - rorykoehler
I am asking because I have Ankylosing Spondylitis and it is seriously reducing my quality of life. I have been considering to go for stem cell or similar (NK cell TR cell etc) treatment for 6 months now but am very apprehensive.<p>There is anecdotal evidence that my condition can be &quot;cured&quot; (at least for 3 years at a time) with stem cell treatment and there are some phase 1, 2 &amp; 3 studies out of China [1][2] (that aim) to back this up. That said I am also aware of the risks and don&#x27;t want to make a bad situation worse especially considering that I have reduced the conditions negative effects from an 8&#x2F;10 to 3&#x2F;10 using diet. Google is practically ineffective for research as it is polluted with companies offering treatment who are heavy on hype and light on evidence.<p>I&#x27;m curious to hear first or second hand experience of stem cell treatment for auto-immune conditions from the HN community. Please let us know about the condition, the treatment, the clinic and the outcome.<p>[1] https:&#x2F;&#x2F;sci-hub.tw&#x2F;10.3892&#x2F;etm.2017.4687
[2] https:&#x2F;&#x2F;clinicaltrials.gov&#x2F;ct2&#x2F;show&#x2F;NCT02809781?term=stem+cell&amp;cond=Ankylosing+Spondylitis&amp;rank=4
======
olavgg
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 amount of good research. And since
Ankylosing Spondylitis isn't exactly life threatening, it is not worth it.

Currently I take NSAIDs, especially newer medicines like Vimovo
[https://www.vimovo.com/](https://www.vimovo.com/) helps a lot, but is not
something you should take every day. I take it mostly during the long winter
months here in Norway, because low temperature makes me really stiff. Chat
with your doctor about options here. My mom get tumor necrosis factor-alpha
(TNFα) blockers, she says it helps her, but I've said no for now as I don't
want to weaken my immune system and I can live with the pain I have now.

Another thing that really helps is regular exercise, you probably already know
about it, but you are probably also like me, that just starting with exercise
is just difficult. Anyway, you should exercise 3-4 times a week with minimum
30 minutes of sweating. For me it helps a lot when my back is really stiff.
And as part of our awesome public health treatment we all get 4 weeks of sick
leave annually. Where we travel as group to Turkey / Spain and go through an
exercise plan. That is really something that has helped me to still be able to
work 100%, You should do something similar even if it cost you money.

~~~
moh_maya
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...](https://www.bloomberg.com/news/features/2018-04-06/when-these-new-
pharma-bros-show-up-drug-prices-tend-to-go-monumentally-higher)

[2]
[https://www.forbes.com/sites/johnlamattina/2018/03/15/physic...](https://www.forbes.com/sites/johnlamattina/2018/03/15/physicians-
and-patients-finally-avoiding-horizons-expensive-low-value-pain-drugs-duexis-
and-vimovo/)

(edit: added 2nd link)

~~~
mnw21cam
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.

~~~
olliej
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.

~~~
pkaye
Naproxen can restrict blood flow to the kidneys so need to be cautious in the
long term.

~~~
olliej
Yeah, but compared to prednisone it's water :)

The NSAIDs are all remarkably safe, as opposed to steroids, and the non-
steroidal non-NSAIDs (wtf thought it was good to make NSAID mean just a
specific group??).

I'm on Celebrex, which is much more exciting in its side effect profile, but
is still preferable to prednisone :-/

------
jnnnthnn
Anecdotal, and not answering the parent's question, but may be useful to
someone, so I'll leave it here. Someone close to me was diagnosed with
Ankylosing Spondylitis and found that swimming essentially erased the
symptoms.

This person was diagnosed in her 30ies. Her GP suggested that, along with
maintaining a good diet, she learn proper swimming technique and start
swimming daily. She has been swimming daily for the last 40 years and has
essentially not suffered from any symptoms for decades, except when she's had
to take breaks due to either travelling or other health reasons.

Obviously, no A/B testing was done here, and I do not know how this could
translate to someone else. But maybe, just maybe, it could help someone
reading this?

Also, swimming is a rather pleasant form of exercise in my experience (though
I do not suffer from AS). So assuming there are no counter-indications, folks
may want to give it a try!

~~~
mjy78
I agree completely. Diet and low impact exercise/stretching are the big ones.

I was diagnosed with AS as a teenager and recall spending months at a time on
crutches with swollen ankles and knees (having a fluid drained and replaced
with cortisone injections), at times it affected my finger joints, and in my
twenties and early thirties my lower back. Throughout most of these years,
particularly early on, Naprosyn was my goto solution.

Up until about 2 years ago, I couldn't imagine getting a solid night sleep
without some kind of lower back pain waking me, and putting my socks/shoes on
of a morning generally involved sitting or laying on a bed and straining to
pull my feet up to reach them.

I'm not big on swimming, but in the past couple of years have taken up regular
Yoga and this has had huge benefits for my lower back (and state of mind).

Even more fundamental to this, I believe is my change of diet. Over the past
couple of years I've (gradually) reduced my sugar, dairy and meat intake and
adopted a more planted based diet. I didn't dive in at the deep end, but I'm
now at the put where the only dairy I now indulge in is the occasional cheese,
I eat virtually no red or processed meats, might eat chicken/fish once a week
at most, and sooth my sweet tongue naturally with fruits, honey, etc.

My lower back hasn't bothered me for about 18 months, I can now put my socks
on while standing and I rarely, if ever, suffer joint pain elsewhere. I feel
more energetic, have taken up running (ran my first 5k recently) which is
something I always thought would be something beyond my reach.

I don't like to preach or say any one particular thing (if anything) is going
to change your particular situation. I can only say the improvement in my
quality of life over the past couple of years has been significant since
changing my diet and introducing some regular movement.

------
markkat
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.

~~~
rorykoehler
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.

~~~
markkat
Sure.

[https://www.ncbi.nlm.nih.gov/pubmed/29273086](https://www.ncbi.nlm.nih.gov/pubmed/29273086)
[https://www.ncbi.nlm.nih.gov/pubmed/30149650](https://www.ncbi.nlm.nih.gov/pubmed/30149650)

It definitely needs more study.

~~~
rorykoehler
Thanks. I find it curious as Neil Riordan from the Stem Cell Clinic in Panama
says the exact opposite (I think in this video but I haven't had time to find
it
[https://www.youtube.com/watch?v=cLKOddCPs9I](https://www.youtube.com/watch?v=cLKOddCPs9I)).
I can't make up my mind if he's a huckster or not. Based on my investigation
through my network (3 degrees of separation) he seems to be legit but of
course that is difficult to confirm.

------
nikolatt
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?

~~~
dc1
Any idea what Humira costs with an "average" insurance in the US?

~~~
cowkingdeluxe
With 60% specialty copay its something around 3,000 I month I think. If you
become part of their ambassador program they may offer to cover up to ~$16k of
those costs per year. Doing that also requires some assistance from the health
insurance program to cover it all in a certain way before Humira will cover
anything. Took a lot of calls.

Other things I'd recommend: Dedicated medical fridge with internal temp
monitors, remote infrared temp gauge to measure package on arrival.

Figures may be a tiny bit off here, going from memory.

------
88e282102ae2e5b
I can't help, but I can guarantee you that getting unlicensed medical advice
from web developers won't make things better.

~~~
themodelplumber
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."

~~~
88e282102ae2e5b
It can also make things actively worse - it's not just additional information,
but potentially disinformation.

~~~
blacksmith_tb
"Disinformation" typically means something intended to mislead[1], as opposed
to "misinformation" which is merely wrong, not intentionally malicious. I
doubt anyone here is intentionally trying to harm others with their advice...

1:
[https://en.wikipedia.org/wiki/Disinformation](https://en.wikipedia.org/wiki/Disinformation)

------
specialist
Please call Fred Hutch Cancer Research Center (w/ Univ of Wash & Seattle
Cancer Care Alliance) and arrange a consultation. Just see what's what.

I had an allogeneic bone marrow transplant to cure aplastic anemia. 30+ years
ago, before they'd isolated stem cells. While methods and tech have _greatly
improved_ since, transplants are still an ass kicking.

One common side effect is graft versus host disease. It really, really sucks.

I've known many other patients. One good friend has had two transplants.
Pretty much all of us did it as a last resort.

Ankylosing spondylitis sounds terrible. I can't imagine.

As for diet & nutrition, I've gotten great benefit from following Dr Terry
Wahls protocol.

Godspeed.

------
salimmadjd
There are early evidence from USC medical school that fasting regenerates new
immune cells from stem cells [0] and some early evidence that it can reduce
the impact of some autoimmune diseases like MS [1].

[0] [https://news.usc.edu/63669/fasting-triggers-stem-cell-
regene...](https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-
of-damaged-old-immune-system/)

[1]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4899145/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4899145/)

edit: typo and clarity

~~~
justajot
Feel like I should also mention ProLon FMD: [https://prolonfmd.com/fasting-
mimicking-diet/](https://prolonfmd.com/fasting-mimicking-diet/)

Invented by Valter Longo, one of the authors of the study referenced in [1].

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

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

~~~
wpasc
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/](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.

~~~
rorykoehler
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.

------
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/](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).

~~~
mtgx
You may find this interesting, too:

[https://www.youtube.com/watch?v=v3pK0dccQ38&feature=youtu.be...](https://www.youtube.com/watch?v=v3pK0dccQ38&feature=youtu.be&t=2054)

------
DoreenMichele
My official diagnosis is _atypical cystic fibrosis._ I manage it with diet and
lifestyle. I'm off all medication.

You say you have seen big improvement with diet. Let me echo what others here
are saying: If you aren't getting regular, gentle exercise (walking,
hydrotherapy), try adding exercise to your regimen before seeking more drastic
measures, like stem cell treatment.

The lymphatic system is powered in part by exercise. It is how the body
removes wastes from the tissues.

I spent several years doing a great deal of walking, often several hours a
day. It took a long time to get better, but I have seen much more dramatic
improvement than I ever expected.

Diet is a major aspect of managing my condition, but walking plays a really
critical role. If you aren't exercising regularly, you are actively denying
your body the opportunity to take out the trash. This isn't good for anyone.
It's worse if you have a chronic condition.

~~~
rorykoehler
As I mentioned elsewhere I get plenty of exercise. I would get more but I'm
somewhat limited by AS. If I spent 6 hours on the bike I get very inflamed the
week after. There seems to be a sweet spot of about an hour a day for exercise
unfortunately.

------
dmitripopov
I suppose HN is not a good place to get answers for questions like this. There
are plenty of AS support groups on Facebook, people there have more
information.

~~~
DoreenMichele
Most "support groups" for specific medical conditions are awful. They
frequently wind up being places you can't actually talk about what's effective
lest you offend or hurt the feelings of the sickest and most miserable members
who typically are willfully ignorant and broadcast a "Why bother? It won't
really help anyway" attitude.

I'm not sure how to find or create a group for really discussing pro active
caretaking in the face of a serious medical condition. There seems to be no
place that actually gets done. You get that kind of discussion amongst very
healthy people -- weight lifters, marathon runners etc -- looking to push for
extra performance. You don't get it among people who are supposed to be
terribly sick and defying that expectation.

~~~
king_panic
+1 from personal experience using such forums/support groups

------
bufferoverflow
My friend did for MS, she had to go to Russia. It was a chemo + stem
treatment. Quite successful. Also the people who were getting the same
treatment did really well, except one old lady, who died from complications.

~~~
vbuwivbiu
I feel I have to say here that I heard from a colleague of a group of people
who recieved stem-cell treatments also there, and they all got cancer. Second-
hand anecdote but there you are.

------
mongo_lover
I had Multiple Myeloma and as part of my treatment, I underwent 2 autologous
stem cell transplants. The process was pretty grueling and it took a couple of
years to get back to my normal self but I certainly believe it was the right
decision for me (given the results).

I am not familiar with your specific disease so I cannot speak to how
effective this would be for your situation but I would advise, as I am sure
you are doing, taking the counsel of a few good doctors with experience
treating similar cases and getting their advice. Assuming your disease is
anything like Multiple Myeloma, there is probably no consensus on the
treatment protocol so you will likely have to go with your gut. What pushed me
over the edge to choose transplantation was a discussion I had with another
patient who told me her doctor had ascribed her survival (vs the rest of her
cohort who had all succumubed) to having taken the most aggressive approach to
treatment. I decided that since I was young, strong and in reasonably good
health, I should press my advantage and take a similar path.

As another patient said to me, "this is not something you would volunteer for
but it is something you can definitely get through". I am happy to talk to you
or anyone else that needs more detail on my experience, encouragement or just
a listening ear. Just leave a comment below and we can figure out how to
connect.

Good luck and Godspeed!

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

------
dfinninger
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?

~~~
rorykoehler
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

~~~
lsh
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.

~~~
rorykoehler
>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.

------
psoriasis_hater
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.

~~~
mdre
Seconded, please do elaborate on this.

------
newgrad
My late Dad had that so I checked myself for it. It sounds like there's a
golden period (of around 2 years since the first consistent back pain) where
the development of the condition can be stopped. Have you passed that period?

~~~
rorykoehler
18 years now unfortunately. Only just diagnosed though

------
airfreak
My wife had HSCT to treat MS a year and a half ago. So far some symptoms went
away, others stayed, but most importantly she hasn't got worse. Fingers
crossed it will stay that way.

~~~
rorykoehler
That's great news. My bro had MS. It's much more serious than AS. As I am
intimately familiar with MS by proxy I'm curious which aspects improved and
which ones didn't?

------
jensvdh
I also have Ankylosing Spondylitis.

Have you tried all biologics? It took me a long time. But Cimizia has been
working wonders for me.

If you live in the Bay Area I would highly recommend visiting the AS Clinic at
UCSF.

------
throw343away
I'm considering it. I have Myasthenia Gravis. Infusions are covered by
insurance and are helping maintain a good quality of life. But it would be
nice to be cured.

------
elcritch
Out of curiosity, have you tried a daily supplement of turmeric? It takes a
few weeks but it appears to have a good effect of helping keeping the immune
system healthy
([https://scholar.google.com/scholar?q=turmeric+inflammation+s...](https://scholar.google.com/scholar?q=turmeric+inflammation+study)).
It helps me maintain some resilience even when I go off diet for my condition
and generally helps "detrigger" my inflammation.

Now to the question in point. What comes to my mind for fellow "hackers" is
how to test / quantify test the results of any such treatment. Does it only
work for ~3 months before effects begin to wane? Before doing any such
treatment I'd personally want to know and have collected a decent amount of
personal information including specific blood cell counts, CRC, various
interleukins, on a daily basis. Which alas is almost impossible for a person
of normal means currently. I know a few people who've done stem cell treatment
for knee / soft tissue injuries and they indicated it helped. That was from a
stateside company.

My take would be to keep studying it and with the momentum in the research
area to wait a year or two before seriously considering it. Hopefully some of
the "quackery" in the field will be shaken out. Of course, IANAD, but I also
believe each patient should be involved in their long term care and become as
informed as possible.

------
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.

~~~
notabee
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.

~~~
Axsuul
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 clues about my condition but has never
brought me anywhere close to normal. I suppose because I was never treating
the root cause of it all.

Recently I went to an internist who ran an infectious disease panel on me.
HHV-6 came up very high. Since then, I've gone on valganciclovir (Valcyte), an
anti-viral that is not FDA-approved yet for treating HHV-6 but has shown
promising results from studies[1]. Stanford has also been at the forefront of
this research when it comes to treating CFS patients with high titers of
HHV-6.

I don't have a success story yet but it's been extremely promising so far.
I've only been on this treatment option for a month and my sleep has never
been better, it has been moving the needle on some of my most stubborn of
symptoms, and I finally feel like I'm making progress.

It also makes sense as a root cause. I donated my kidney about 5 years ago and
that's when everything started to go downhill. Even though HHV-6 is a virus
that almost every human being on the planet has, my compromised immune system
at the time likely allowed the virus to re-activate to become a persistent
chronic infection.

I hope this helps. In general, there has been surmounting evidence of viruses
behind many chronic diseases. Just the other day there was post on Hacker News
linking Alzheimer to the Herpes virus[2].

1\. [http://hhv-6foundation.org](http://hhv-6foundation.org)

2\.
[https://news.ycombinator.com/item?id=18265115](https://news.ycombinator.com/item?id=18265115)

~~~
hycaria
Why did you donate your kidney ?

~~~
Axsuul
To my father who had chronic kidney disease (Stage 5)

------
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.

------
Karlozkiller
I never heard of stem cell treatment for auto-immune diseases at all. Got two
conditions myself, I would not go for such a 'radical' treatment at this point
though as I do not feel I suffer enough to try it out.

I will read up on it though.

But for know I'll just ask a question. What are the actual risks of stem cell
treatment?

~~~
rorykoehler
Look up Graft-versus-host disease [https://www.wikiwand.com/en/Graft-versus-
host_disease](https://www.wikiwand.com/en/Graft-versus-host_disease)

------
LauraLaura
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.

~~~
LauraLaura
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 :)

------
king_panic
People with severe autoimmune conditions have had success treating them with a
carnivore diet. I'm not recommending it, just introducing information. Jordan
Peterson's daughter suffered severe juvenile arthritis (replacements of
ankle/hip before 18th birthday) and is a proponent. Her story is interesting.

[https://www.youtube.com/watch?v=wXPqIDx3_DM](https://www.youtube.com/watch?v=wXPqIDx3_DM)

------
XantosD
I've had some experience with Humira for my Psoreasis. I have been able to be
off the meds for almost 5 years, after around 9 months on it, due to work
circumstances, that made it impossible for the self-injections.

------
dmead
It's been suggested that i might have this as well.

could you talk about what you had to go through for a diagnosis?

Literally every morning is hell. Should i just say fuck it and move to a warm
climate?

~~~
rorykoehler
Go to get a test for hla-b27 gene and inflammation makers at a hospital. Try
get a referral to a rheumatologist. They will do the tests and also send you
for xray of critical joints that are affected.

------
__d__
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.

~~~
evanagon
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.

------
mitchtbaum
5 Natural Approaches To An Autoimmune Disease

[http://www.knowthecause.com/index.php/contributor-
blog/46-ky...](http://www.knowthecause.com/index.php/contributor-blog/46-kyle-
drew/4814-5-natural-approaches-to-an-autoimmune-disease)

------
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...](https://www.biorxiv.org/content/biorxiv/early/2018/09/24/424945.full.pdf)

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​](https://www.youtube.com/watch?v=9tUtC4rcZ3w​)

MinION, how it works
video:[https://www.youtube.com/watch?v=GUb1TZvMWsw](https://www.youtube.com/watch?v=GUb1TZvMWsw)
Python is the most widely used computer language:
[https://codewith.mu/​](https://codewith.mu/​)
[https://codewith.mu/en/tutorials/1.0/plotter](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...](https://blogs.rstudio.com/tensorflow/posts/2018-01-29-dl-for-cancer-
immunotherapy/​)

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

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

------
zackmorris
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...](http://stopautoimmunity.com/en/2016/11/20/ankylosing-spondylitis-
there-is-hope/)

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!

~~~
rorykoehler
I am convinced that we will discover many auto-immune diseases are the same
disease manifesting in different ways due to environmental factors.

I have researched all the aspects you mention thoroughly already and I can't
agree more with your closing paragraph. Spot on!

------
MaupitiBlue
Any experiences with stem cell treatments for nerve injuries?

------
isatty
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.

~~~
baldfat
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.

------
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.

~~~
superasn
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...](https://zacalstin.com/2017/06/30/how-i-overcame-ankylosing-
spondylitis/)

[2] [http://www.tmswiki.org/forum/threads/big-improvements-in-
ank...](http://www.tmswiki.org/forum/threads/big-improvements-in-ankylosing-
spondylitis-pain.14896/)

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

