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John, Volunteer Mentor
@johnbishop

Posts: 2967
Joined: Mar 22, 2016

Food for Thought - Why so many Autoimmune Diseases?

Posted by @johnbishop, Mon, Jan 29 7:53am

Let me start by saying change is not easy and I am still looking for answers. Over the years I have used a myriad of excuses for not eating healthy – but at some point I have to take responsibility for my choices. For me giving up fast food was really hard and to be honest I think about it when I’m bored so I try to keep my mind occupied. I like learning as much as I can about my health and using natural food and supplements when possible to fix what ails me so to speak. I ran across a short TED Talk by Dr. Terry Wahls – “Mind your Mitochondria” that makes a lot of sense to me and strengthens my resolve to make changes in my eating habits.

What do you think? Can we change?

John

REPLY

Dr Wahls is awesome!!!

Inflammation, inflammation, inflammation — is the root of autoimmune disease. We have to continue to get a handle on this. Diet is a huge factor.

@johnbishop Hi, John. You raise an interesting question, to which there are, sadly, many answers, probably most of them correct. Laziness and poor diet are obvious quick answers. But more. First, Ever take a look at your DNA? For hundreds of thousands of years we have been specializing our bodies, diets, immune systems to deal with where and what we are at the moment. So what do we do? We go around the world, and space, and other worlds, picking up a bug from here, a dna from there, radon from someplace else, and don’t give a rip about it until we are diagnosed with whatever because our bodies have not yet learned the ropes. Second, We are developing new triggers for AI every day. Starting with Radon, nuclear energy and weapons, weed killers, vaccines, medications, etc. Our bodies just are not caught up with all this “stuff”. But that is neither good nor bad. It just is what it is. One thing we must do is lose our fear of whatever is new, and do two things. One, work toward control of all this stuff. Two, teach our bodies, minds and spirits to cope and prosper in the midst of our new world. Throwing our hands in the air, screaming and giving up is never going to answer anything. That is what I like about this line, and you volunteers. The old book, “brave New World” had many weaknesses, but the encouragement to face the new world bravely is not one of them.

We agree… Diet and nutrition. I started a couple of months ago to mostly eat a Vegan menu

@darlia

We agree… Diet and nutrition. I started a couple of months ago to mostly eat a Vegan menu

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@darlia is the vegan diet working? I was wondering if vegetarian or vegan diets work better then the other.

Liked by Darlia

@johnbishop John last week l went to a new rheumatologist and the first thing he said why have you come to see me? I really don't know if that's the new questions the doctors ask you or what but anyway l told him about the mayo clinic and he explains to me if they cant find out why your ana and rnp is high then l won't but he decided to run all the test over again. Then by the end of the week he was prescribing hydrocholquine which l had an allergic reaction. I spent 80.00 for the med, er visit then another er visit because they thought l was having a stroke which was crazy and then when l go back to the er the doctor tells me werent you here the night before? Rude, rude,rude. Then l had to have a ct and it was normal so l called the doctors office to see if they where going to give me another med. Since having being told to return in 6months to now 2months. So l called the doctors office again because l could only leave the nurse a message. Now l have an appointment to see him. I asked her why am l going through all this? What did he see? Well she finally said mixed connective tissue. I looked that up and it seems like its just a lot of autoimmune immune diseases which l knew at the beginning but which one? Its like you are an experiment to something they dont have a clue. So l just wanted to know if this could be the problem you have with your liver that you already know you have liver disease. I thought you might know. It seems like the patient knows more than the doctor.

@darlia

We agree… Diet and nutrition. I started a couple of months ago to mostly eat a Vegan menu

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I am not a Vegan, but I am a Vegetarian. I eat fish. I don't even miss meat anymore. I broke down and had a piece of Prime rib one night. Could not even eat half of servicing. I don't loose weight and I don't gain weight. I am not saying it is fun, but red meat scares me. Who knows what they are feeding the cattle???

Liked by Darlia

@techi

@johnbishop John last week l went to a new rheumatologist and the first thing he said why have you come to see me? I really don't know if that's the new questions the doctors ask you or what but anyway l told him about the mayo clinic and he explains to me if they cant find out why your ana and rnp is high then l won't but he decided to run all the test over again. Then by the end of the week he was prescribing hydrocholquine which l had an allergic reaction. I spent 80.00 for the med, er visit then another er visit because they thought l was having a stroke which was crazy and then when l go back to the er the doctor tells me werent you here the night before? Rude, rude,rude. Then l had to have a ct and it was normal so l called the doctors office to see if they where going to give me another med. Since having being told to return in 6months to now 2months. So l called the doctors office again because l could only leave the nurse a message. Now l have an appointment to see him. I asked her why am l going through all this? What did he see? Well she finally said mixed connective tissue. I looked that up and it seems like its just a lot of autoimmune immune diseases which l knew at the beginning but which one? Its like you are an experiment to something they dont have a clue. So l just wanted to know if this could be the problem you have with your liver that you already know you have liver disease. I thought you might know. It seems like the patient knows more than the doctor.

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Hi Lisa (@techi), I'm sorry you are having so much difficulty. The ER doctor sounds like he needs an attitude adjustment. Did they diagnose you with Mixed Connective Tissue Disease? You might want to read through the conversations in this Connect discussion:

MCTD (Mixed Connective Tissue Disease)
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

John

@techi

@johnbishop John last week l went to a new rheumatologist and the first thing he said why have you come to see me? I really don't know if that's the new questions the doctors ask you or what but anyway l told him about the mayo clinic and he explains to me if they cant find out why your ana and rnp is high then l won't but he decided to run all the test over again. Then by the end of the week he was prescribing hydrocholquine which l had an allergic reaction. I spent 80.00 for the med, er visit then another er visit because they thought l was having a stroke which was crazy and then when l go back to the er the doctor tells me werent you here the night before? Rude, rude,rude. Then l had to have a ct and it was normal so l called the doctors office to see if they where going to give me another med. Since having being told to return in 6months to now 2months. So l called the doctors office again because l could only leave the nurse a message. Now l have an appointment to see him. I asked her why am l going through all this? What did he see? Well she finally said mixed connective tissue. I looked that up and it seems like its just a lot of autoimmune immune diseases which l knew at the beginning but which one? Its like you are an experiment to something they dont have a clue. So l just wanted to know if this could be the problem you have with your liver that you already know you have liver disease. I thought you might know. It seems like the patient knows more than the doctor.

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Hi John, I went through that and got several different opinions (3 different rheumatologists and 3 dermatologists). One came up with a rare auto immune called dermatomyosistis w/o muscle involvement. After reading up on all my symptoms I realized many have the same symptoms. Antibiotics always helped my symptoms while the standard meds did nothing that I could identify (and I kept a detailed diary on a daily basis of how I felt, new rashes, etc. everything. After 4 years of in and out hospital for various things I decided I had many infections that finally were identified and treated. Today I'm much better but I still have some neuropathy and severe calcinosis which they all feel can't be treated. I'm just happy the infections were found and treated (liver was wrapped around infected gall bladder and I know I had some type of pneumonia that wasn't clearly identified for at least 6 or more months). Much more to my story but keep looking for additional opinions and something might make sense and actually help. Plaquenil didn't help me either. Good luck. Autoimmune is not easy for any doctor but they need to take the time and do various tests and do some research to help you. So many of them are a 10 minute visit standard.

@techi

@johnbishop John last week l went to a new rheumatologist and the first thing he said why have you come to see me? I really don't know if that's the new questions the doctors ask you or what but anyway l told him about the mayo clinic and he explains to me if they cant find out why your ana and rnp is high then l won't but he decided to run all the test over again. Then by the end of the week he was prescribing hydrocholquine which l had an allergic reaction. I spent 80.00 for the med, er visit then another er visit because they thought l was having a stroke which was crazy and then when l go back to the er the doctor tells me werent you here the night before? Rude, rude,rude. Then l had to have a ct and it was normal so l called the doctors office to see if they where going to give me another med. Since having being told to return in 6months to now 2months. So l called the doctors office again because l could only leave the nurse a message. Now l have an appointment to see him. I asked her why am l going through all this? What did he see? Well she finally said mixed connective tissue. I looked that up and it seems like its just a lot of autoimmune immune diseases which l knew at the beginning but which one? Its like you are an experiment to something they dont have a clue. So l just wanted to know if this could be the problem you have with your liver that you already know you have liver disease. I thought you might know. It seems like the patient knows more than the doctor.

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Hello @techi,

It sounds like you are having such a frustrating experience, and I completely understand your last remark," It seems like the patient knows more than the doctor."
Getting a firm diagnosis remains one of the most challenging roles of any physician. With medical knowledge expanding so fast, and also becoming more specialized, it would be nice if, sometimes, a doctor acknowledged that he/she cannot be an expert in all conditions across all specialties. Specialists especially, have trained for so long that they may overlook the rapid advancements in medicine, and are then surprised to learn that patients with chronic illness may know more about their own condition!
I'd think that patients knowing stuff would make a doctor's job easier – to explain stuff and answer questions.

On the other hand, what is difficult is a patient wanting to treat themselves – that's hard for a doctor to accept or permit. When patients think they know better than the doctor, but don’t, that's when problems arise. And it's not because of what they do or don’t know, or because they ask questions. It is simply that they may want to control their own case, and are reluctant to let the doctor do his/her job.

Lisa @techi, there is so much therapeutic value in just being heard, and also in hearing about others. I encourage you to keep asking those questions and talking about your experiences – that's how we learn and support each other on Connect.

@jigglejaws94

Inflammation, inflammation, inflammation — is the root of autoimmune disease. We have to continue to get a handle on this. Diet is a huge factor.

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Agree Agree Agree….also gluten is a source too. Gluten Free is the way to go. Gluten causes inflammation

@darlia

We agree… Diet and nutrition. I started a couple of months ago to mostly eat a Vegan menu

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Moderation of Vegan though. You can occasionally add your animal proteins too. Plant based is the new buzz word

@darlia

We agree… Diet and nutrition. I started a couple of months ago to mostly eat a Vegan menu

Jump to this post

Greetings Lisa~.. I would say that it is helping me feel much better to leave beef, chicken and pork alone. I have had some turkey and chicken and small amt of grass fed hamburger and a few pieces of bacon and some cheese too recently .. but this was over the last couple of months and it was in a small amount. Mostly eating without meat. We do eat fish and eggs too. The Vegan diet lasted for a couple of weeks and then we thought, okay, we can't do the complete switch all at once, but need to ease into it.. So, I make many recipes that are without meat and we use more grains like brown rice, wild rice, black beans, Kasha and buckwheat and lots of vegetables. I love to cook so experimenting has been fun. Pinterest has many many good ideas and recipes for anything you want to try. Also, I found a good resource in a site called Ancient Grains.
https://wholegrainscouncil.org/whole-grains-101/whats-whole-grain/ancient-grains
If you watch the documentary produced by Netflix Originals called
"What the Health?" …. You will be so amazed at how the 'meat' that is produced today is killing us!
Stay Safe!
Darlia

@techi

@johnbishop John last week l went to a new rheumatologist and the first thing he said why have you come to see me? I really don't know if that's the new questions the doctors ask you or what but anyway l told him about the mayo clinic and he explains to me if they cant find out why your ana and rnp is high then l won't but he decided to run all the test over again. Then by the end of the week he was prescribing hydrocholquine which l had an allergic reaction. I spent 80.00 for the med, er visit then another er visit because they thought l was having a stroke which was crazy and then when l go back to the er the doctor tells me werent you here the night before? Rude, rude,rude. Then l had to have a ct and it was normal so l called the doctors office to see if they where going to give me another med. Since having being told to return in 6months to now 2months. So l called the doctors office again because l could only leave the nurse a message. Now l have an appointment to see him. I asked her why am l going through all this? What did he see? Well she finally said mixed connective tissue. I looked that up and it seems like its just a lot of autoimmune immune diseases which l knew at the beginning but which one? Its like you are an experiment to something they dont have a clue. So l just wanted to know if this could be the problem you have with your liver that you already know you have liver disease. I thought you might know. It seems like the patient knows more than the doctor.

Jump to this post

@johnbishop yes john he did diagnoses me with that l was suppose to see my rheumatologist today but the weather was bad so l get to see him next week and maybe tell him l wasted 80.00 on meds and now he can give me samples to see if l am not allergic to them and if l am not he can give me the prescription for free. I had wasting money on medicines that l cant take. You know what l mean. Havs a good evening John and thanks for the information l will look it up.

Hi @kgoodwin9, thank you for allowing me to share your private message in this discussion. I think it may be helpful for other members who may also be looking for answers and allow them the chance to share information they have learned.
———-
I have large areas of calcinosis and many the diameter of golf balls. Ones on my buttock are about 3 1/2" x 5". Very large. Been to many local doctors in Florida, Sarasota and to Mayo Clinic in Rochester for autoimmune but they took pics of the calcinosis at that time 11/2015. Since then they grew larger to the sizes I indicated in memo. Are there any groups that have this issue that I should join?
———-
Hello @kgoodwin9, I'm not aware of any support groups for Calcinosis but I did a search and found discussion of calcinosis on buttocks that may help. It was started in 2010 and has 2 pages of posts with the newest from 2014.
https://www.sclero.org/forums/topic/9651-calcinosis-on-buttocks/
———–

Anyone have any information they can share with @kgoodwin9?

Thank you,
John

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