
I had an autoimmune disease, then the disease had me (2013) - daegloe
http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me
======
zzyx1yz
I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent
Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the
disease didn't manifest until my 40s, like type 2.

I suffer from moderately severe diabetic foot pain. My doctor prescribed some
medication that provided marginal, at best, relief. About a year ago, I had a
persistent fever. I took some aspirin to knock down the fever (I almost never
took aspirin before that) and discovered that it provided significant relief
from the foot pain. More recently, I had a bad cold, and I took some cold
medicine that includes acetaminophen, something that I also almost never took
before that. It seems to help even more than aspirin. I am wary of taking
acetaminophen regularly, because of the warnings about liver damage, but it is
something I am considering for those times when the foot pain is severe.

What I would recommend for people suffering from these kinds of problems is
that they embrace the idea of Quantified Self. Start keeping a diary of
_everything_. The things you eat, the things you do, and the symptoms you
experience, in excruciating detail. Then start looking for patterns and
correlations. Put the data into a spreadsheet, generate charts. Learn
statistics, learn about correlations. Learn Bayesian Probability. You may be
able to find the specific triggers that cause your symptoms, and maybe the
things you can do (or avoid) to reduce your symptoms.

~~~
yladiz
Not sure the causes of the foot pain, but if you haven't use many NSAIDs
before, check out ibuprofen. It's safer than the other drugs in its class and
performs better at most functions including inflammation. The major benefit of
acetaminophen over ibuprofen is that ibuprofen can cause upset stomachs more
easily whereas acetaminophen is less likely to do so.

I'd be careful and consult your doctor about the pain though, since any NSAID
can cause complications for your body if you have specific issues if the NSAID
is used over a long period of time.

Here's one article about NSAID use and one article about the FDA warning about
long term usage of NSAID:

1: [http://www.vox.com/2015/8/17/9165189/best-painkiller-
tylenol...](http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol-
aspirin-advil)

2: [https://www.nytimes.com/2015/07/14/science/experts-urge-
spar...](https://www.nytimes.com/2015/07/14/science/experts-urge-sparing-use-
of-nonaspirin-painkillers.html)

~~~
candiodari
Firstly, do not self-medicate. And do not take online medical advice : go see
a doctor.

The reason you have foot pain is that your blood is thicker : it has a harder
time flowing further away from your heart. This has 3 consequences, not just
one.

1) is feet, or other extremeties, not getting enough oxygen. This will result
in weird tickling, then numbness, then necrosis, which will hurt.

2) is nerves deteriorating or dying in your extremeties due to repeated
instances of 1. This can lead to pain upon the slightest stimulation. Someone
touches your feet and you feel like a needle has been stuck entirely through
your foot.

3) is too much sugar in your blood. This is why it's thicker. This will result
in a big boost to whatever bacterial infections you already have in your feet
(we all have a few).

If you must take online advice then please:

First, a number of things have now become really stupid. First on the list:
you need loose fitting shoes now. Note: not sandals. Sealing your feet in
"flexible" sport/running shoes can worsen your condition rapidly, especially
if you lace em tight as well. Likewise walking around barefoot is stupid,
especially outside. You need comfortable and fresh socks at all times, and you
should not walk around without having your feet covered, given what can happen
if you hurt your feet.

Letting your feet freeze, even just to a point that would be fine for normal
people, has just become stupid. If it happens anyway, fix with water. Start
with ever so slightly warm water and slowly raise the temperature. What works
best is having warm water flow over your feet. The point of this is to warm
the blood going through it, so despite how it feels the first moment that this
actually has an effect is 2 minutes after you've started doing it. You want to
do this for 4 minutes absolute minimum, but 10 minutes is certainly better.

Second, when you feel this happening : change your posture. The easy way to
provide relief is to lower pressure, and you do that by making sure the
vertical distance inside your body is minimized, and nothing is pushing on
anything else (e.g. crossed legs, sitting on your feet or knees, ...). If
possible, lie down, if not, at least sit down. Change position regularly and
move.

Aspirin can help, but go easy on it. You might consider having the lowest
possible dosage you can find, and just taking it constantly. Needless to say,
you should discuss with a doctor first. Be careful about mixing alcohol and
medication, even in small quantities.

It may also be good to have a "training regimen": stretch your feet every day
at least. Move every toe forward and backward a few times using your hands and
bend the foot every way it'll go a few times.

Thirdly, if you don't keep your feet impeccably clean, I guarantee you you
will regret it. Warm (not hot, warm) water, twice a day, at least. If your
skin dries out skip the soap one out of the two times, or find a better soap.

Fourthly, any slight wound to your feet can infect like you wouldn't believe
and result in amputation (or death). If your cat playfully and slightly breaks
the skin on your feet, and it doesn't even hurt, you still have a doctor clean
it and prescribe antibiotics for a day or two. Serious wounds need to soaked
in alcohol (medical alcohol, vodka works but is not as good, so only for
emergencies). You go back for checkups.

~~~
cm2012
I often see the advice to go see a doctor, but I honestly think it's the rare
doctor that is helpful beyond antibiotics and blood tests.

~~~
yladiz
For things that can be handled by quick research online, and things that don't
necessarily need a doctors approval (e.g. Should I take ibuprofen or
acetominophen?), seeing a doctor is overkill. But for most situations, it's
not that simple and a doctor, especially one who knows your medical history,
would be very useful in determining if something is good or bad, what the
risks may be, what complications something may have with a medication, and so
on. This is especially true for a less common disorder or disease.

------
raydev
It started when I was 25. I found the area above my ears, just at the
hairline, was always itchy and flaky. Within a few months my scrotum turned
red and itchy and flaky. Since there had never been anything wrong with me
other than than a flu or two, I immediately went to the doctor. The diagnosis
was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex.

2 years later I grew giant, hard skin patches on my knees. My fingernails
started detaching. I could live with it, although as a gym rat I needed to
make sure my knees were wrapped since doing anything on my knees ripped the
skin open.

My fingernails continued to go through phases of detachment and normalcy, and
I've lived with the limited skin problems because they were limited. But just
in the last year I've grown giant scaly patches up and down my back, and now
there are spots growing, expanding across my forehead and nose. I can see how
people look at me now, there's something clearly wrong with my face.

I'm terrified. I've always had general fatigue that seemed to match flareups
in my skin. While the angriest, spreading psoriasis + fatigue comes in waves,
each wave seems worse than the worst that came before. I'm scheduled to see a
dermatologist in a few weeks (in Canada, I've had to wait 3 months just be
able to have this appointment) but my deepest fear is that I'll be told this
is my life now. Even though I know that's the answer, I know there's no cure
for psoriasis.

I don't know why I'm typing this, except perhaps that I realize that both the
author and I are on the same hunt, and not finding much of anything that can
help us feel like we're more than 80% (or 60% or 40%) of the person we were as
teenagers. But perhaps there is hope that I'm seeing more articles like this,
autoimmune diseases are getting more attention.

~~~
daegloe
My doctor in NYC was the first to bring to my attention the emerging link
between autoimmune disease and microorganisms. After 20 years of managing with
medicine and hitting rock bottom 2 years ago, he encouraged me to consider
drastically altering my diet.

I started eating autoimmune-paleo (like the author) and anti-fungal. The
improvement has been dramatic and life changing. I'm now off all medication. I
still have a bad day every now and then, and I may need to revisit the meds at
some point down the road. But I'll tell ya, after years of feeling hopeless,
it's amazing to take control and regain some sense of normalcy.

If you haven't examined your diet, I would strongly encourage you to do so.

Please feel free to reach out to me using the email address in my profile.
That goes for anyone here.

~~~
laughfactory
Dr. Mercola swears by the eating "pure" approach to solving many autoimmune
diseases: no prepared food, no refined sugar, food made from scratch from the
highest quality ingredients (organic, or as close to it as you can get). One
of these days when my arthritis gets too bad I'm going to give it a shot. It's
expensive, and a massive change in lifestyle (no more fast food! Or
restaurants!), but I can see why it'd be so effective.

~~~
smohare
Mercola is one of the worst promoters and profiteers of pseudoscience.

[https://www.google.com/amp/scienceblogs.com/insolence/2012/0...](https://www.google.com/amp/scienceblogs.com/insolence/2012/08/03/15-years-
of-promoting-quackery/amp/)

Here Mercola is ranked in the same "pure garbage"category as the Food Babe.
[http://www.nature.com/news/science-journalism-can-be-
evidenc...](http://www.nature.com/news/science-journalism-can-be-evidence-
based-compelling-and-wrong-1.21591)

------
pybank
I have been through the same. I am 33 now and I was diagnosed with Hashimoto
when I was 28. I am still managing the whole situation as best as I can. Today
I am physically more fit that I even was in my entire life. Although I have
many sessions of unexplained memory loss and brain fog.

The funny thing is that if you have one autoimmune disease, it is highly
likely that sooner or later you will also encounter another one. I was
diagnosed with three. Including one affecting my eyes pretty badly.

The way I am managing it all is by 1\. making sure my adrenal does not
deplete(went through a super adrenal crash last year) 2\. good dental
hygiene(it does help massively) 3\. avoid sugar, refined carbs, alcohol. 4\.
Probiotic natural Yogurt and apple cider vinegar seems to keep my system
happy, milk makes things worse. 5\. B-complex and Vitamin - D on a regular
basis.

point 3 and 4 are to ensure that my gut is maintained well.

The important thing is to make sure that you try to take good care of your
adrenal gland and pituitary , because they tends to overwork to compensate the
malfunctioning organ that is under attack at the time.

The longer I continue my unrefined diet, good sleep cycle and avoid stress,
the more my body heals.

I used to be quite a sharp minded computer scientist, now that sharpness comes
and goes, other times there is fog, which is not very nice :-) But I have hope
that eventually I will be better, I am already much better than last few years
:-)

------
wellboy
I am going through the same right now.

2 years ago I was running my startup Tennis Buddy, and everything was fine
when I got pins and needles pain one morning all over my body and blurred
vision.

I have had this a lot of times before in my life (around 20 times), and it
always went away with rest within 1 week with no problems. However, this time
I was in the middle of finishing a contract and didn't take rest. A couple of
days later, I reduced work lod to become better, however it seems like it was
too late, since the pins and needles pain just didn't go away anymore.

After a month of still not getting much better, I went to see doctors, however
they could not find anything. There was the assumption that it was
psychological, however, I just don't have any symptoms of depression.

During that time, I noticed that only very little exercise (running for 1 min)
increases the pins and needle pain for several days or even weeks. Then for
the next year, I tried to not exert myself at all and stopped all work to get
better. This did reduce the symptoms, however, just small exertion triggers
the symptoms again. After this happening a couple of times, I also got strong
muscle twitches (several thousand per minute sometimes) all over my body.

There was also the assumption that I had CFS, however, it does not fit, since
I just have no fatigue at all, I only have constant nerve pain/pins and
needles, blurred vision and muscle twitches.

I also moved back to my parents and had to leave my friends, so it's getting
really difficult for me to stay positive. Please let me know any advice that
you might have.

~~~
rayuela
Stay strong man. The technology to address these sorts of ailments feels like
it's right around the corner, so don't give up on this now.

------
reasonattlm
Near complete ablation of all immune cells in circulation is proving to be
pretty effective as a way to put autoimmunity into long-lasting remission. It
can be done with high dose immunosuppressants at the cost of much the same
symptoms as cancer chemotherapy - these are harsh drugs - plus a few day
period of vulnerability to infection while the immune system rebuilds. But the
cures are demonstrated, for type 1 diabetes and multiple sclerosis over the
past five to ten years.

All automimmunities should be amenable to cure this way, as the malfunctioning
is based on bad data that is stored in the immune cells, nowhere else. Newly
created immune cells do not have this malware; they acquire it from the
existing population. (It would be interesting and novel to find an
autoimmunity where this is not the case).

Unfortunately, the cost-benefit equation for this current form of ablation
doesn't work for things that don't kill patients. No-one undergoes
chemotherapy for a condition that merely shortens your life expectancy by a
decade and makes you miserable, as chemotherapy has a significant risk of
death and shortens your life expectancy by a decade.

So what is needed are better forms of ablation, those with no side-effects.
The programmable gene therapy cell killer produced by Oisin Biotechnologies is
one possible class of approach, as are other targeted cell killing approaches
such as that demonstrated last year to selectively kill blood stem cells.

Then an application of cell therapies is needed, creating immune cells from a
patient tissue sample, and infusing them in bulk immediately following
ablation, to remove the period of vulnerability.

These are very feasible targets. A company could be founded today, right now,
to do this, and have something ready for human trials by 2019. Sadly, here as
elsewhere in medicine, there seems to be no hurry to change the world.

~~~
kakoni
> But the cures are demonstrated, for type 1 diabetes and multiple sclerosis
> over the past five to ten years.

Are you talking about the "Burt" full immune system reboot method (repeated by
Snarski + Li)? I've never seen any follow-up studies on the participants, how
are they doing after 5-10 years (meaning still insulin independence?)

------
gist
I feel bad for the people who have told of their issues and suffering in the
comments here. But I have to say that every time I see a health article on HN
(or in the news) as well as the comments about individual cases it draws me in
and gets me down. No benefit. I only get anxiety as a result. I have found
this to be more the case in the past several years with what I call (as only
one example) the 'cancer industrial complex'. Constant barrage of info
discussing cancer, cures, studies, drugs, particular people's problems. A
benefit to those suffering or those helping people who suffer for sure. But I
would argue to everyone else potentially harmful and very hard to get away
from.

Back in the day this wasn't the case. There wasn't this barrage of info. You
only knew of a handful of cases in your small circle of friends or family. It
didn't seem like danger was lurking around every corner. Anyone else feel the
same way?

~~~
everyone
Yeah. I actually have a lot of stuff in common with the author of the article.
(low platelet count, low thyroid function, low vitamin d, low iron, (also high
uric acid)) And my aunt has rheumatoid arthritis. I've also always had a
serious peanut allergy + a few other minor ones.

Except that, I feel fine. I'm 34, I do lots of cycling and hiking, and work on
making computer games in the evenings. Reading stuff like this definitely
stimulates the hypochondriac in me. Also I feel so bad for the people posting
the awful symptoms they suffer. Considering I'm ok atm I should just not worry
about it I think. Anyway, bit rambling, but my 2 cents.

ps. I only found out about the above details when I went to doctor for 1st
time in like a decade for dizziness. Turned out there was a natural gas leak
in the apartment I was renting at the time which definitely seemed to be
causing it.

~~~
gist
> I only found out about the above details when I went to doctor for 1st time
> in like a decade for dizziness

I go to the doctor every 6 months for a checkup and lab work. I got into the
habit of having the lab work done (request the script) the week before the
appointment. That way I wouldn't have double anxiety. Prior to that I'd meet
with the doctor, he'd give me a script and then I'd have to wait for him to
call with the results. Also found it was helpful to schedule other
appointments (eye, dental) around the same time. Compact all the anxiety into
a 2 week period.

One thing that is good is my wife is an internal medicine doctor but deals
usually with really sick hospital patients. So typically anything that I am
concerned about I can just ask her and she can put my mind to ease. (So far
hah hah).

The only upside to the anxiety that I have (I wouldn't call it severe but it's
noticeable) is that I get a definite mood bump right after an appointment when
I find nothing is wrong. [1]

[1] So hey since you don't go every year or more you don't know what you are
missing!!!

------
thanatosmin
More so than brain function, cancer, etc, I feel like we'll look back in a
decade or two's time and be shocked at how little we understood autoimmune
diseases. Sure, we understand that the immune system adapts in an almost
evolutionary way, and can wrongly recognize self-components as foreign. But
what signals cause this adaptation? What's causes antibodies to develop
against your thyroid, or beta cells, or skin? We understand how so many
components of the immune system work, but have so far to go assembling the
pieces.

------
gwern
> The truth is, I had no idea what autoimmune disease really was. For years,
> I’d known that two of my mother’s sisters had rheumatoid arthritis and
> ulcerative colitis (and my father’s youngest sister had recently learned she
> had Hashimoto’s). But I didn’t understand that these diseases might somehow
> be connected. At Christmas, I’d had lunch with three of my mother’s
> sisters—humorous, unself-pitying Irish-American women in their fifties—at my
> grandmother’s condo on the Jersey Shore, and they told me that two of my
> cousins had been feeling inexplicably debilitated. “None of the doctors can
> figure out what it is,” one said, “but I think it’s thyroid-related.”
> Another aunt told us that, along with the rheumatoid arthritis she’d had for
> years, she, too, had recently been given a diagnosis of Hashimoto’s, and
> both were autoimmune in nature. The third aunt had ulcerative colitis, and
> told me that a cousin had just been given that diagnosis, too. “They’re all
> connected,” one of them explained.

They certainly are. It's an interesting area of genetic correlations, the
autoimmune cluster:
[https://en.wikipedia.org/wiki/Genetic_correlation#Disease](https://en.wikipedia.org/wiki/Genetic_correlation#Disease)
Also notable for relatively large genetic effects from the large and difficult
MHC gene.

------
mirimir
The immune system is scary. It's based on mutability and selection. During
embryonic development, there's basically a phase where "self" gets defined.
Lineages of immunocompetent cells that can target self get killed off.

But sometimes it screws up. Maybe you encounter something that triggers
expansion of lineages with autoimmune potential. Or maybe there's damage that
exposes previously hidden antigens to the immune system. There's undoubtedly a
genetic component too.

------
cpncrunch
To best honest it sounds more like CFS than autoimmunity. The article says
that it turned out not to be thyroid, and the autoimmune diagnosis was just
presumed. Generally when you have those symptoms it is termed CFS, but people
don't like CFS because they incorrectly think it means "all in your head" or
"you're not really ill".

CFS tends to be triggered by stress (as it was in this case), and sufferers
tend to lead stressful lives (being an editor of New Yorker is definitely
stressful). The things that worked for her -- alternative therapies, living a
healthier and less stressful life -- typically help with CFS.

From having CFS myself and recovering, it seems to be caused by a state of
persistent burnout caused by chronic stress. It's usually multiple stressors
that build up and cause the brain to shut down the energy supply. It's not
caused by a moral failing or laziness. I see it as similar to the central
governor that limits athletic performance. You have no control over it, other
than to change your lifestyle and hope that your brain recognises that there
is no longer any chronic negative stress.

~~~
pcrh
Chronic fatigue can be caused by undiagnosed organic illnesses.

Personal anecdote: I had CFS for several years, and when the diagnosis (an
easily treatable genetic condition) was eventually made, and treatment taken,
I was better within a few months.

~~~
cpncrunch
Yes, but by definition it isn't CFS if that is the case, as CFS is a diagnosis
of exclusion at present.

It's certainly possible that CFS is caused by some as-yet-unidentified organic
illness. However the science doesn't seem to point in that direction (as the
stress system seems to be centrally implicated), and it also doesn't fit with
the experiences of patients like myself who have fully recovered.

~~~
pcrh
I may be splitting hairs, but "chronic fatigue" is a symptom. When its
aetiology is unknown it is often classified as CFS. I would not be surprised
to find that as medicine progresses many cases of CFS become re-classified.

Certainly, stress would exacerbate any symptoms of fatigue.

~~~
cpncrunch
Yes, that's pretty much what I said. With the addition that if you look at the
overall evidence it does seem to be pointing towards stress as the cause.

~~~
pcrh
In the absence of an underlying vulnerability, it would seem pretty unlikely
that stress alone would be sufficient to cause CFS. Many people have very
stressful lives (including being refugees, being under regular fire, etc)
without getting CFS.

~~~
cpncrunch
The same can be said for PTSD. Whether or not chronic stress leads to
hypocortisolism and burnout/CFS seems to be whether or not dealing with the
stress is in the best interests of the organism
([https://www.ncbi.nlm.nih.gov/pubmed/15950390](https://www.ncbi.nlm.nih.gov/pubmed/15950390)),
along with other factors such as time since onset, nature of the stress,
personality factors, etc.

Stress-related disorders are quite common among the military and refugees
(higher level of prevalence than the general population).

------
Karlozkiller
When I was a lot younger than I am now, I was rushed to a hospital ~1000KM
away from where I live, with liver-function-markers shooting through the roof.

After 2 weeks of checking everything in every way possible, they figured I had
auto-immune hepatitis (body attacks my liver). That explained why I had been
very tired, doctors said I'd take about 6 months before I could return to
school, because I would be too tired and might get ill because my immune
system would be weaker as I ate medicine limiting my immune system.

After 2 weeks of staying mostly home, eating immuno-repressant, I was bored as
hell, went back to school and was back in full form, and I rarely get a cold
or anything.

Never had any symptoms other than yellow eyes when it was worst, and extreme
tiredness when it was the worst, apart from that it only shows itself when
people actually analyze my blood...

No one really knows what the cause is, but there are many theories. It's fun
to add some mystery to life, there's still a lot to discover ^^

------
spraak
It may not work for everyone but for my partner's autoimmune disease (Lupus)
eating raw cannabis has been very stabilizing. The raw form has the acid form
of the cannabinoids, which are responsible for the anti-inflammatory qualities
associated with cannabis.

The heated form is also useful, but thr key has been to incluse lots of raw
form.

------
rdtek
In case it's helpful to anyone who suffers from CFS I want to share a
treatment which enabled me to recover 100%. It's called the Lightning Process:

[http://lightningprocess.com](http://lightningprocess.com)

The theory is that CFS is caused by long term anxiety which sets off
biochemicals such as adrenaline into your heart and bloodstream. These
chemicals suppress your immune system and reduce your energy systems.

The treatment aims to switch off the source of the negative chemicals i.e.
stop the anxiety. The methods are a mixture of self talk/coaching, posture
changes, recognizing and confronting sources of anxiety and setting clear life
goals to work towards a place of feeling less anxiety.

The LP was recommended to me by someone who also recovered from CFS. I'd say
definitely give it a try if you are a sufferer of CFS, chronic anxiety or
similar illness.

~~~
derefr
Do note that the constellation of symptoms associated with "chronic long-term
anxiety" isn't exactly the same as the one for auto-immune disease; it's
rather much closer to that of
[https://en.wikipedia.org/wiki/Cushing%27s_syndrome](https://en.wikipedia.org/wiki/Cushing%27s_syndrome).
CFS and Cushings are indeed probably related, though.

------
westvaflamer
I was diagnosed with Kawasaki Disease at age 2.5, a condition where the immune
system attacks the blood vessels. I'm 29 now and recently became very ill; I
lived off of less than 500 calories a day, for a month, without losing weight.
I began to hallucinate lightning upon seeing light and believing I could read
others minds.

I think the Epistein Barr Virus plays a beneficial role in the regulation of
autoimmune disorders. Once it sets up shop inside a cell, it activates to
produce its viral proteins upon low vitamin B12 or poor mitochondrial
function. Its (9) proteins are similar to human inflammatory proteins and
confuse T-cells into becoming self-reactive. Which could possibly redirect
some autoimmune attack that is causing a decrease in the hosts metabolism into
systemic inflamation. (Vitamin B12 is a methyl donor which is used to silence
gene promotors, low vitamin B12 could possibly cause the cell be in some
uncontrolled state.)

I've found relief for my condition in vitamins B,C,D, Immunoglobulin (sold OTC
as colostrum), Excedrin, DMSO, iodine, and marijuana (prepared in a pressure
cooker with coconut milk).

My family thought I went insane, all I talked about was DMSO and iodine for
several months. This was until the family dog developed a fatty tumor on her
leg that cut off its own blood supply and became necrotic. I applied the
DMSO/iodine and it was greatly improved within 24 hours and almost completely
gone within 5 days.

All I really know about those drugs is DMSO suppresses mitochondrial activity
and iodine increases it.

------
__d__
Has anyone managed autoimmunity with food? I've seen several people who went
on a keto diet and psoriasis disappeared. I've seen people who go on a low fat
vegan diet and it cleared up. There's seems to be a handful of diets which
give some people success so I'm not advocating one diet over the other. Just
that there may be a way to manage it and was wondering if anyone has had
success?

~~~
djsumdog
Celiac disease is an autoimmune disease that can be controlled entirely via
diet; specifically because people with it cannot process the Gluten found in
wheat.

(Fun fact: Rice has gluten too; but it's not a variety that people with Celiac
have trouble digesting).

~~~
tathougies
Gluten isn't a particular molecule. It refers to the mix of proteins found in
the wheat tribe of the family Poaceae. Rice has certain proteins and
prolamins, but they are not those found in wheat. When people refer to gluten
in the chemical sense, most people mean gliadin and glutenin. Rice has
neither.

In what way do you mean rice has gluten? Glutinous rice is 'glutinous' in the
Latin sense of the word -- it's sticky (like many plant products). It does not
mean it has gliadin or glutenin.

------
salimmadjd
My wife is going through a version of this right now. We are scheduled to see
a specialist at Stanford in a few weeks.

Just last March we hiked to Patagonia and camped there. We hiked for about 8km
to the camp place. She even carried more weight on her back than I did. But
this last December when we went snowshoeing in the Canadian Rockies, she had
to stop every few minutes from fatigue. I helped carried half of her stuff for
her. Not having her, the old ways, has been rather sad. She has an amazing
attitude about it, so it's very helpful. But I'm constantly praying and hoping
for her to get better.

I have read so many things online and have come out rather frustrated how
limiting the Medical science is around treating or fixing autoimmune disease.

The only thing I've found so far is this:

I call it the, "nuclear option". They use chemotherapy to kill your immune
system and use stem cells to rebuild it from scratch. There is apparently a
hospital in Mexico that does that for less than $100k with some success but no
true scientific rigor yet [1]

Alternatively, there is some research suggests that fasting for 48-72 hours on
regular bases has shown to regenerate a new immune system. However, unclear if
the new immune system will just attack the antibodies again or it would be
blinded to that history. I wish they would do more research on that front [2]

I also have been thinking about other ways that technology might help
sufferers better monitor themselves and ultimately use some data analysis to
better understand if there is specific diet changes that can help keep the
disease in control.

If you know of other things please comment.

[1] [http://www.thetimes.co.uk/article/bbc-reporter-hails-stem-
ce...](http://www.thetimes.co.uk/article/bbc-reporter-hails-stem-cell-cure-
for-multiple-sclerosis-5wd3hwfsh)

[2] [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/)

~~~
manmal
Before you go nuclear, have you considered a less invasive option, namely
fecal transplants? There's not much research yet, but it looks promising for a
lot of diseases, including chronic fatigue:
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/)

~~~
salimmadjd
I'm a big believer in the gut-immune system connection. I've observed that
with my own boy. However, there is no real good science there, yet. This is an
area that could use some grants. While every philanthropist wants to cure
cancer, it seems like there is a lot of good science out there in the need of
investment.

~~~
uberduber
I'm currently seeing a functional medicine MD recommended by my
rheumatologist. Functional medicine doctors are really into the gut-immune
side and my rheumatologist says he's seen some amazing results. I've been on
an elimination diet for about 2 months without results, but in almost every
paleo/aip/whole30/pfd cookbook I've been reading, the author's bio says
something about recovering from autoimmune disease through diet.

~~~
manmal
One thing that helped me (though I'm not yet finished recovering from a period
of high stress) was to do the things that strengthen the gut barrier. As long
as the barrier is permeable for large particles, you will have foreign objects
floating around and your immune system attacking them. Here is a very long
article:
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2....](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2.66990)

Specifically, strains like Bifidus Longum are beneficial, and of course
reducing stress (negative outlook etc) is. The article particularly stresses
efficacy of 5-HTP, but I've not tried that yet. IMO very overlooked one: weak
stomach acid. My symptoms get WAY better if I consistently use vinegar and
supplement zinc.

~~~
uberduber
Interesting, that is what my doctor said as well. I did test positive for
SIBO, so I am currently taking rifaximin which should help. I had a friend
with various vague problems as well and he said he felt 75% better after
getting treated for SIBO and candida. I've also been taking digestive enzymes,
betaine hcl and iberogast but they don't seem to being doing anything.

Before I started seeing this doctor, I did take VSL #3 which greatly helped my
relatively mild stomach/digestive problems, but did nothing else. I know there
are quite a few people with severe Crohn's/UC that have achieved remission by
taking massive amounts of it daily.

------
jostmey
I don't understand the pain or struggles with such a disease. I am sorry for
those who suffer. But research in the field is becoming very exciting. Right
now tons of data from patient's antibody and T-cell receptor repertoires are
becoming available. The field is going through a big data moment. Suddenly
large number of antibody and T-cell receptors are being sequenced. Hopefully
smart people will be able to identify disease causing sequences

Data Fountain:
[https://clients.adaptivebiotech.com/immuneaccess](https://clients.adaptivebiotech.com/immuneaccess)

------
researcher11
I have CFS/ME which I manage to about 60% normal. It's not enough and like
many I'm doing enough to continue existing but nothing more. My next
experiment is Low Dose Naltrexone (LDN) which sadly had to be bought illegally
over the Internet so it's taking a long time to get. Has anyone here tried
this? Did it work?

~~~
55555
It worked very well for me but made me extremely (scarily) restless (mentally
too) and screwed my sleep up beyond belief. I never tried dosing during the
day, though. Feel free to email me.

------
astrojams
I have Crohn's Disease. It's a struggle. Some folks have recommended getting a
fecal transplant. It is supposed to add bacteria to your gut that Crohn's
patients don't have. This stops the autoimmune response. Supposedly. Not sure
if this sort of treatment is approved by the FDA.

~~~
geerlingguy
With almost any autoimmune disease, there are a thousand remedies that haven't
yet been proven to be effective. It might be... or not, but if you can find
other ways to manage it through more traditional channels (doctor, surgery,
etc.), then I'd go that route.

Have had Crohn's since 2003, have had every drug that has been medically
approved by the FDA, and had first surgery last year.

Beware of anecdotal data, and always get a second (and sometimes third!)
opinion before changing any kind of treatment.

------
olelu
I have hashimoto's, I'm wondering if anyone has more info on the fasting that
some people mentioned in the comments, I've never heard of this, I've done AIP
and that worked for me pretty well, but am always looking for other potential
ways to stabilize the disease.

------
alabamabill
I have a rare auto-immune disease, a subtype of vasculitis. No symptoms, no
abnormal blood tests. I got really lucky finding it through a routine xray.
Have been managing it and monitoring it ever since.

Been down the kumbaya food path, maybe it's what got me this disease (tried
some shady immune boosting drinks on and off before getting diagnosed, just
for the sake of it).

I am monitoring research and for my specific disease there doesn't seem to be
much in the pipeline. But one drug developed for some other auto-immune
disorder can manage mine as well. I am putting hope in AI and machine
learning, to guide scientists to faster discoveries. And I hope the socio-
political climate doesn't escalate to the point of halting research.

------
SQL2219
[https://www.ncbi.nlm.nih.gov/pubmed/27417999](https://www.ncbi.nlm.nih.gov/pubmed/27417999)

------
Mz
_Autoimmune disease occurs when, for some reason, the body attacks its own
healthy tissue, turning on the very thing it was supposed to protect. This, at
least, is the premise: “auto,” or “self,” attack.

From the start, though, the study of autoimmunity has been characterized by
uncertainty and error._

I hate the term and the very concept of an autoimmune disease. I can't wait
for the world to conclude this was lazy BS that allowed doctors to gloss over
their lack of understanding of what was really going on. I am heartened to see
the above passage acknowledging that "at least, that's the premise" (aka the
idea or current theory) and the next sentence acknowledging that this idea
really isn't on very solid ground.

~~~
tathougies
Do you not believe the body can create antibodies against itself? In what
sense do you hate the concept of auto-immune disease? Do you not believe in
cancer as well

~~~
Mz
I have a so called autoimmune disease. I have gotten dramatically healthier by
making dietary and lifestyle changes.

My experience of being diagnosed with an autoimmune disease is that it is a
good excuse for doctors to wash their hands of responsibility for getting you
well. They blame your defective body and their goal is "symptom management."

Using your cancer example, it would be like not trying to rid your body of
cancer and just trying to slow the growth of the tumors instead. People would
balk at being told we aren't even going to try to cure you of cancer, we are
just going to manage your symptoms until it kills you. But this is the gist of
what patients are routinely told if their condition is classified as an
autoimmune disorder.

Furthermore, my experience of my condition does not fit with the idea that my
body simply attacks itself for no apparent reason. My experience fits much
more closely with the idea that my body is the battleground and it takes
collateral damage in the fight.

I believe when the body attacks some part of itself, that body part likely
carries infection or otherwise has had something go so wrong that treating the
entire area as The Enemy makes sense at this time. That state can be reversed.
If it is reversible, no, the body has not simply gone insane and started
randomly lashing out at itself. Its actions are logical and purposeful.

------
glup
I want to use HN to do a quick informal survey on this topic: please state #
of your male friends with similar conditions, # female friends with similar
conditions, country or state, and whether you live in an urban vs. rural area
(yes I know that this is a crappy methodology and likely a very biased sample)

~~~
Karlozkiller
Do you refer to what is spoken about in the article, or auto-immune disease as
per se?

I have heard medical statistics stating that 9 out of 10 with auto-immune
disease is female. Which to me would imply that something gender-specific,
like genetics or the likes, is hugely responsible.

I get the feeling what you're getting at is that women are supposed to be
weaker and get easily confused and it's all in their head though (apologies if
that is in no way what you mean.)

But I can confirm that I am one of the lucky 1/10th of the overall population
who have a diagnosed auto-immune disease being male.

~~~
dmix
I have Ulcerative Colitis which is an autoimmune disease and my doctor who is
a famous IBD researcher has said that Chrons/Colitis affects women about 90%
more often than men. In fact on my dads side there are 3 females with it (both
2x Chrons and 1x Colitis) and I'm the only male so far in the family tree.

