Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

I had an autoimmune disease, then the disease had me (2013)

newyorker.com

Post reply on HN
Print view View original

121–130 of 144 posts

Re: I had an autoimmune disease, then the disease had me (2013)

#121

Post by daegloe »

modulusprime wrote: post #99
uberduber wrote: post #39

Earlier quoted context omitted.

I have an autoimmune disease and way too many friends with them as well, so I'm very familiar with the seeing countless doctors. Most people ended up getting a proper diagnosis at either a rheumatologist or neurologist.

You and everyone else in this thread should know that "immunologist" is an existing specialty. Find one. Make sure it's not just an allergist, but an academic type with multi-system hospital privileges.

+1 for the Immunologist recommendation.

That's where everything finally came together for me.

Re: I had an autoimmune disease, then the disease had me (2013)

#122

Post by laughfactory »

yladiz wrote: post #64
zzyx1yz wrote: post #57

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 fev…

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 thoug…

Do be aware the ibuprofen and the like can be incredibly hard on your stomach. Ibuprofen caused gastroenteritis so severe I went to the ER due to the excruciating pain. Apparently daily/frequently usage is often associated with gastroenteritis. Which sucks because it is effective. I recommend taking natural antiinflammatories instead. There are quite a few which are effective. Also, ranitidine (commonly suggested for stomach acid issues) is very well tolerated by the stomach, cheap, and really effective at controlling inflammation.

Re: I had an autoimmune disease, then the disease had me (2013)

#123

Post by laughfactory »

daegloe wrote: post #50
raydev wrote: post #26

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 o…

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…

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.

Re: I had an autoimmune disease, then the disease had me (2013)

#124

Post by fian »

__d__ wrote: post #32

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?

There has been some interesting discoveries related to sudden onset red meat allergies in eastern Australia due to tick bite:

http://www.abc.net.au/science/articles/2014/02/25/3951271.ht...

When the ticks bite, they inject a small amount of blood from their previous host. If the host was a non-ape mammal, then that blood will also contain a sugar, alpha-galactose, that humans lack. Sometimes the immune system misidentifies this sugar as a foreign body and develops antibodies. Now when the bitten person eats red meat their immune system ramps up to attack the alpha-galactose, resulting in a delayed onset allergic reaction.

Having read the article, the appearance of the rash in Vietnam followed by the onset of symptoms suggests something similar make be the cause in the author's case. Her body may have developed antibodies to something food in common foods. This might explain the headaches she experienced when she ate.

Re: I had an autoimmune disease, then the disease had me (2013)

#125

Post by tathougies »

cpncrunch wrote: post #11

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…

This is the stupidest thing I've read. She has a confirmed auto-immune disease. CFS (Chronic Fatigue Syndrome) isn't a diagnosis -- it's a description of symptoms with no understanding of the underlying cause. Hashimoto's is an actual disease, as we understand the mechanism behind it, even if we can't prevent it.

Re: I had an autoimmune disease, then the disease had me (2013)

#126

Post by tathougies »

cpncrunch wrote: post #11

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…

This is the stupidest thing I've read. She has a confirmed auto-immune disease. CFS (Chronic Fatigue Syndrome) isn't a diagnosis -- it's a description of symptoms with no understanding of the underlying cause. Hashimoto's is an actual disease, as we understand the mechanism behind it, even if we can't prevent it.

Re: I had an autoimmune disease, then the disease had me (2013)

#127

Post by tathougies »

djsumdog wrote: post #82
__d__ wrote: post #32

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?

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).

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.

Re: I had an autoimmune disease, then the disease had me (2013)

#128

Post by tathougies »

Mz wrote: post #92

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…

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

Re: I had an autoimmune disease, then the disease had me (2013)

#129

Post by uberduber »

modulusprime wrote: post #99
uberduber wrote: post #39

Earlier quoted context omitted.

I have an autoimmune disease and way too many friends with them as well, so I'm very familiar with the seeing countless doctors. Most people ended up getting a proper diagnosis at either a rheumatologist or neurologist.

You and everyone else in this thread should know that "immunologist" is an existing specialty. Find one. Make sure it's not just an allergist, but an academic type with multi-system hospital privileges.

Any tips on finding one? I'm assuming you don't mean infectious disease specialist. I'm familiar with most of the allergists in my area and none are immunologists.I just did a search on google and I can't seem to find any in SoCal.

Are they clustered somewhere in the country? Like how all the geneticists seem to be on the east coast, and the limited geneticists here all seem to be in children's hospitals.

Re: I had an autoimmune disease, then the disease had me (2013)

#130

Post by yladiz »

cm2012 wrote: post #118
candiodari wrote: post #111

Earlier quoted context omitted.

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 o…

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.

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.
Post reply on HN