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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)

#131
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…

No cure now. We can push for closer, more detailed, more personal medicine, more open and largescale too. That's the only option for people outside of the already known solutions.

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

#132
post #50

Earlier quoted context omitted.

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 s…

This one? https://www.psiram.com/en/index.php/Joseph_Mercola

Watch out! Looks like a scam artist that sells voodoo.

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

#133
post #50

Earlier quoted context omitted.

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 s…

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

https://www.google.com/amp/scienceblogs.com/insolence/2012/0...

Here Mercola is ranked in the same "pure garbage"category as the Food Babe. http://www.nature.com/news/science-journalism-can-be-evidenc...

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

#134
post #50

Earlier quoted context omitted.

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 s…

Dr. Mercola being an absolute nut aside, what does "organic" have to do with the composition of the produce itself? I can perhaps understand wanting to avoid antibiotics in meat and animal products, but all organic fruit/vegetable production does is prohibit certain types of fertilizers and pesticides (while allowing others), which don't impact the composition of the final product anyway. It has an impact on the environment, land use, and the cost of food production, but the food is chemically the same. So how would it have any health benefit or produce a "purer" product?

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

#135
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…

What do you eat? You should try a restrictive Autoimmune diet.

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

#136
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…

That's interesting, in my mid 20's the area above my ears also became itchy and flaky, inflamed, just like you describe, and it lasted for years. My hair started thinning out in that area as well, and I was generally not feeling well. In my early 30's I started noticing correlation between eating wheat products, especially anything with white flour, and the symptoms flaring out/getting worse in the next few days. I started removing all foods with gluten from diet (which I found pretty easy actually, basically no more bread and stick to rice, sweet potatoes, beans and fruits for starch) and the symptoms disappeared almost entirely over a few weeks. I started supplementing with daily vitamin D and started to feel even better. I would experiment with removing gluten from your diet and vitamin D supplementation to see if the symptoms improve over a 2-3 week time frame, if you haven't tried already.

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

#137
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

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.

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

#138
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…

Would you be willing to discuss your logging methods? I'm putting together a group of people doing self-tracking for autoimmune conditions in Berkeley (or remotely), and I'm trying to get the logfile format correct. (Free software project) josh@codeselfstudy.com

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

#139
post #50

Earlier quoted context omitted.

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 s…

>> It's expensive, and a massive change in lifestyle...

I don't think it's expensive and not so much of a difference in life style. I went on LCHF diet (low carb, high fat). I don't even miss sugar, or pasta or bread, I don't need it. Once I had a cheat day every 10 days, but now I don't need this stuff. I enjoy amazing 0 carb deserts, that are sweet too. Plus I am lucky to have a gf who makes amazing 0 carb cakes. For breakfast I often eat egg omelette with spinach (in leaves), with sour cream and butter. It keeps me full for a long time. My energy levels are through the roof. On LCHF you can also eat out, just don't eat starchy foods, stick to fat and proteins. I think this is the easiest diet to try and tweak later.

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

#140

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.

Try actually reading the article -- and perhaps doing some research -- before deciding to make an ignorant attack.

- she doesn't have auto-immune disease any more, but still has symptoms - auto-immune diseases are typically triggered by stress - we know that stress is a trigger for CFS and it fits the etiology

>Hashimoto's is an actual disease, as we understand the mechanism behind it

No, not quite. Many people have thyroid auto-antibodies but don't have thyroiditis, and some people (like the author of this article) have no auto-antibodies, but still have symptoms. Also there have been no placebo-controlled trials on the treatment, so we don't even know if it is effective. Do some research and you'll see it's not quite cut and dried.

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