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

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

#91

Post by rayuela »

wellboy wrote: post #46

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 cou…

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.

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

#92

Post by 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.

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

#93

Post by Mz »

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…

If you do take ibuprofen, be aware that you probably need to also take extra B vitamins. It is known to deplete a specific B vitamin. A quick google suggests it is B12, but I suggest you do some research of your own to confirm that.

I took daily ibuprofen for years. It is commonly prescribed for my condition. My need for B vitamins plummeted when I finally got off of it.

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

#94

Post by Mz »

__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?

Diet plus lifestyle. Yeah.

But I had to roll my own, so to speak, as everyone thinks that does not work for my condition. I get a LOT of flack for talking about it online.

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

#95

Post by 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.

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

#96

Post by throwawaylalala »

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…

Have you researched the ketogenic diet?

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

#97

Post by alexandersingh »

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…

I want to echo this advice. One of my closest friends was diagnosed with Crohn's Disease in his teens, having surgery not long thereafter. He began researching for ways to get it under control which led him to anecdotal evidence on the benefit of adopting a revised diet.

He has been vegan for almost a decade and has had no major problems since.

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

#98

Post by yladiz »

Mz wrote: post #93
yladiz wrote: post #64

Earlier quoted context omitted.

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…

If you do take ibuprofen, be aware that you probably need to also take extra B vitamins. It is known to deplete a specific B vitamin. A quick google suggests it is B12, but I suggest you do some research of your own to confirm that. I took daily ibuprofen for years. It is commonly prescribed for my condition. My need for B vitamins plummeted when I finally got off of it.

It looks like it lowers levels of folic acid, which is vitamin B9: http://pennstatehershey.adam.com/content.aspx?productId=107&.... Looking at the other articles for B vitamins on ADAM, it seems that only folic acid is affected.

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

#99

Post by modulusprime »

uberduber wrote: post #39
nostromon wrote: post #30

Earlier quoted context omitted.

Going through something very similar. Started 6 years ago when my lips became inflamed out of nowhere. Lasted a confusing week and then was gone like it was never there. About a year later, it came back again a little bit worse and with some discharge. This pattern continued, sometimes only a few months between outbreaks, and sometimes over a year. New symptoms started coming with each outbreak. At this point I can f…

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.

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

#100

Post by 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.
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