Autoimmune Research

Posted by Langold @rarelybees2889, Aug 15 3:01pm

So I just joined a major autoimmune biorepository at Mayo Clinic.
I joined because we need answers and I am tired of being told "we don't know" and taking drugs meant for something else that MIGHT work.
I am tired of being told but I don't fit into what little is know about what they know about my autoimmune disease and having it listed as "her general autoimmunity" because it is not understood.
I am aware that as women, we lag behind in being researched and treated.
I can't count the times what I have was grouped as the "flu" by a doctor who is just guessing at best and finding out a few years later that I have a very unusual immune system.
We need answers now, so I am trying to make that happen, for myself and every other person who is being told "we don't know" and given a drug meant for something else….

Thank you for your very important speach. Myself and many, many others I am sure also feel the same. It was needed to be said. Peach..

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Hugs, Peach and thanks.

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In the past I've said I could walk into the Mayo Clinic and ask, "What causes my RA?" and they would say "We don't know but we can treat it." Humph. I actually like the Mayo Clinic–the point is that I am asking the best hospital in the U.S.

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@rarelybees2889 Langold, how did you find out about this biorepository? What specimens did you supply? It certainly makes me curious the "shelf life" of the samples, and what research may be done! As someone with an ultra-rare autoimmune kidney disease [less than 50 ever diagnosed in the world, and only patient living in U.S.], I have also heard the same responses as you. My kidney disease was diagnosed at Keck USC and confirmed by both Cedars Sinai in Los Angeles, and a major hospital in Alabama. Many doctors don't want to admit they have no information nor insight into a condition, so they say what they hope will placate the patient. There is no cure nor treatment for my disease.

A very valid point that was made to me, was that there is only so much research time/money/persons. And those resources are going to focus on the more common disorders, not on something that successful research will benefit only a few. Hard news to hear as a rare disorder patient, isn't it?

What do you do to make your daily life the best it can be?
Ginger

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@rarelybees2889 I wanted to share several ideas regarding autoimmune disease. Humans didn't evolve eating grains and were hunter gatherers. It was the discovery of the cultivation of grains during Biblical times that allowed the human population to proliferate because more food was available. (A good book about that is "Going Against the Grain")

I happened to watch a program on PBS last night with a doctor talking about how diet plays a big role in disease because of a condition called "leaky gut" and he stated that to be healthy a person needs a lot of good bacteria in their gut that has a protective effect against the bad bacteria. He said that that lectins in plants cause gut problems and he talked about recovering from a leaky gut through proper diet and putting autoimmune disease into remission. He also talked about pesticide use on crops causing damage by killing off our good gut bacteria and that it's everywhere even in meats because the animals eat grains with these pesticides. He has a lot of books, but here is a quote.

"In The Plant Paradox, renowned cardiologist Dr. Steven Gundry reveals that gluten is just one variety of a common, and highly toxic, plant-based protein called lectin. Lectins are found not only in grains like wheat but also in the “gluten-free” foods most of us commonly regard as healthy, including many fruits, vegetables, nuts, beans, and conventional dairy products. These proteins, which are found in the seeds, grains, skins, rinds, and leaves of plants, are designed by nature to protect them from predators (including humans). Once ingested, they incite a kind of chemical warfare in our bodies, causing inflammatory reactions that can lead to weight gain and serious health conditions."

He answered a question about the best diet for autoimmune issues at the beginning of this podcast. https://drgundry.com/longevity-paradox-questions/ and when I clicked on the Plant Paradox link, it had the quote I posted.

I can also tell you from my own person experience of reforming my diet and removing gluten, dairy, nightshades (tomatoes, peppers, eggplant), reducing sugar intake, etc, I felt a lot better. Also I had some issues caused by some toxic dentistry with old silver amalgam fillings that I had removed, and also old root canals that were leaking an infection and cadmium (heavy metal used in gutta percha that is placed during a root canal) into my jaw bone. I had a problem with several teeth with old root canals and recently had them removed in order to replace them with bio-compatible xirconium dental implants.
I've had an autoimmune thyroid disorder, Hashimoto's, and after replacing all the silver fillings with a biological dentist for safer alternatives, my thyroid function improved a lot, and I have been able to reduce my need for thyroid hormone pills. The blood work indicating my antibodies against my thyroid had been off the charts, and after the old fillings were removed, the levels were low and readable, but still there. It improved again after the bad root canal teeth were removed and also my asthma improved significantly. I used to walk around with a baseline amount of chest phlegm all the time, and now my lungs have cleared. I still have allergic asthma, but it is much easier to control. I've not had further blood tests to confirm improved thyroid function, but I've been able to lower my dose. What happens is that my dose of thyroid hormone becomes an overdose when my thyroid starts doing more of its job, so I can figure out what's happening when I start having symptoms of an overactive thyroid. I was surprised to find the link between my general health and dental health. I discovered this only after things got worse, and my asthma had gotten worse over several years which I connect to the root canals. Those came about many years ago because of trauma when I broke my teeth as a kid.

There is also a stress component to autoimmune disease and your past history may set you up for problems later in life. I wanted to share a book by an author who recovered from autoimmune disease. I have not read this book, but I have one of her other books about overcoming life's adversity and how your biography of experience relates to possible disease later in life. She's an excellent medical writer and has been recognized in her field. Here's the book. https://donnajacksonnakazawa.com/autoimmune-epidemic/

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@rarelybees2889 – I am very impressed that you took charge of your health and joined the autoimmune repository! Can you explain a little more about what happens there?
I also went for years not knowing what caused my GI autoimmune disease. Even Mayo could not explain it until 5 years ago when new research showed what and why I had what I had. Also extremely rare. With a diagnosis I was offered immunosuppressive meds that cured me- at least for the past 4-5 years.
Unfortunately, all the years of daily pain and discomfort wore me out physically and mentally.
Thank you for taking that step and sharing with us.

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@rarelybees2889 This article explains why some autoimmune diseases are so hard to detect and why so little is known about them.
https://pathology.jhu.edu/autoimmune/development

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@jenniferhunter

@rarelybees2889 I wanted to share several ideas regarding autoimmune disease. Humans didn't evolve eating grains and were hunter gatherers. It was the discovery of the cultivation of grains during Biblical times that allowed the human population to proliferate because more food was available. (A good book about that is "Going Against the Grain")

I happened to watch a program on PBS last night with a doctor talking about how diet plays a big role in disease because of a condition called "leaky gut" and he stated that to be healthy a person needs a lot of good bacteria in their gut that has a protective effect against the bad bacteria. He said that that lectins in plants cause gut problems and he talked about recovering from a leaky gut through proper diet and putting autoimmune disease into remission. He also talked about pesticide use on crops causing damage by killing off our good gut bacteria and that it's everywhere even in meats because the animals eat grains with these pesticides. He has a lot of books, but here is a quote.

"In The Plant Paradox, renowned cardiologist Dr. Steven Gundry reveals that gluten is just one variety of a common, and highly toxic, plant-based protein called lectin. Lectins are found not only in grains like wheat but also in the “gluten-free” foods most of us commonly regard as healthy, including many fruits, vegetables, nuts, beans, and conventional dairy products. These proteins, which are found in the seeds, grains, skins, rinds, and leaves of plants, are designed by nature to protect them from predators (including humans). Once ingested, they incite a kind of chemical warfare in our bodies, causing inflammatory reactions that can lead to weight gain and serious health conditions."

He answered a question about the best diet for autoimmune issues at the beginning of this podcast. https://drgundry.com/longevity-paradox-questions/ and when I clicked on the Plant Paradox link, it had the quote I posted.

I can also tell you from my own person experience of reforming my diet and removing gluten, dairy, nightshades (tomatoes, peppers, eggplant), reducing sugar intake, etc, I felt a lot better. Also I had some issues caused by some toxic dentistry with old silver amalgam fillings that I had removed, and also old root canals that were leaking an infection and cadmium (heavy metal used in gutta percha that is placed during a root canal) into my jaw bone. I had a problem with several teeth with old root canals and recently had them removed in order to replace them with bio-compatible xirconium dental implants.
I've had an autoimmune thyroid disorder, Hashimoto's, and after replacing all the silver fillings with a biological dentist for safer alternatives, my thyroid function improved a lot, and I have been able to reduce my need for thyroid hormone pills. The blood work indicating my antibodies against my thyroid had been off the charts, and after the old fillings were removed, the levels were low and readable, but still there. It improved again after the bad root canal teeth were removed and also my asthma improved significantly. I used to walk around with a baseline amount of chest phlegm all the time, and now my lungs have cleared. I still have allergic asthma, but it is much easier to control. I've not had further blood tests to confirm improved thyroid function, but I've been able to lower my dose. What happens is that my dose of thyroid hormone becomes an overdose when my thyroid starts doing more of its job, so I can figure out what's happening when I start having symptoms of an overactive thyroid. I was surprised to find the link between my general health and dental health. I discovered this only after things got worse, and my asthma had gotten worse over several years which I connect to the root canals. Those came about many years ago because of trauma when I broke my teeth as a kid.

There is also a stress component to autoimmune disease and your past history may set you up for problems later in life. I wanted to share a book by an author who recovered from autoimmune disease. I have not read this book, but I have one of her other books about overcoming life's adversity and how your biography of experience relates to possible disease later in life. She's an excellent medical writer and has been recognized in her field. Here's the book. https://donnajacksonnakazawa.com/autoimmune-epidemic/

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Thanks for the book references. I have Hashimoto's and RA. I had my silver fillings replaced back around 2004, three years after the RA diagnosis. I developed the RA after very much emotional stress. I started asking friends with autoimmune conditions whether a time of stress preceded their developing autoimmune conditions and, as far as I can remember, all of them said, "Yes." This did not include Hashimoto's, only the more problematic ones. I once read that Scandinavians are more prone to developing Hashimoto's than non-Scandinavians. I know that my Norwegian/Swedish mother and her brother were hypothyroid but they didn't know what caused it and didn't seem interested in finding out.

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