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What caused this Sarcoid?

IamGrateful
  • By IamGrateful
  • Posted August 14, 2009 at 1:24 am · 17 replies
  • In Triggers
  • Shared with the public
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I am a little curious, since most things have a cause.

What do YOU think stimulates or triggers sarcoid in the body?

Bottomline, what is the cause of Sarcoidosis?

Explore topics in this discussion:

Exercise Asthma Pneumonia Pain Menopause Sarcoidosis Stress

17 replies

mvaughn1018

Good luck in solving this mystery. I asked my pulmonary doc the very same question. I've never smoked or worked in an industrial/chemical environment or a hospital. To our knowledge no one in my family has this disease but me. (Don't get me wrong, I'm thrilled no one else suffers with it!) My family doctor says that every patient she has that has sarcoidosis also has an asthma component. She has a whole 13 patients. Last year, I was told that I have allergic asthma. Perhaps it's an allergic reaction??

EAPohl

I've had many things trigger a flare. Vitamin D, stress, even catching the flu, but not an asthmatic problem (for me at least). From all I've read there does not seem to be any one causative agent over all, but there may be one or two thing which cause reactions for each individual person. This seems to be one of the most problematic things about this disease no concrete traceable cause and effect. Other than having Sarcoid there may be no commonality between people suffering the disease. IE vitamin d causes flares in my case, but makes someone else feel great.

mrsbias

Real good question...can't figure it out...but for me it seems like the sun is totally against me along with stress. I am beginning to even change my eating habits....really trying to put my finger on it....lol..when I can raise them.

Mellie1954

Some believe it to be bacteria. I subscribe somewhat to this theory.

However, I started going through menopause at the same time this sarc started. I believe the "change" triggered it in me. It was a double whammy.

I can't explain how "the change" can trigger bacteria.

J7

Hiya,

When you say vitamin d triggers a flare, do you just stay off all vitamin d now altogether? And what kind of flare up is it?

My dad is 'end stage' pul sarc. if there is anything that you could suggest to keep the flare ups away . . .

Thanks X

J7

EAPohl

When I take Vitamin D within 24 hours I have problems breathing, my joints hurt to the point I cannot use my hands, and my leg joints swell. My sarc is primarily in the joints, kidneys and lungs.

ellj

There is not an answer to that question. I bet if you graphed answers you'd get results across the board for what people think started their sarc. The truth is that the cause and cure just haven't been discovered yet.

MrsUyarlar

One question we all wish we had an answer for, but i think bacrteria is Definitely the cause for SARC cause when u think about it our immune system is too active or too weak, and the only way that could have happen is if our body's or are were contanstlty trying to heal or overcome from an illness. So Unfortuanately in our case something was damaged and was never normal again to bring on such an illness we have! Just my opinion! Thanx Take care

SarcSux

The reason we get sick for the first time is that we have grown enough granulomas in a particular organ to interrupt its normal function. There might have been an insufficient number to cause problems until some sort of stress (infection, cold) caused our overactive immune sys to kick into super overdrive to attack the legitimate invader. The super ImmSys reaction also increases the number of granulomas.
I always just thought it took a loong time to get over the cold. Probably took steroids and antibiot for the cold that also soothed the sarc.
Maybe not.

PASULLY

ALL I KNOW IS I HAVE IT DO NOT LIKE HAVING IT AND WANT MY LIFE BACK BEFORE HAVING IT. IT REALLY DOES NOT MATTER HOW WE GOT IT, WE GOT IT, RIGHT NOW. ONE THING YOU MUST NOT GIVE IN FIGHT AS HARD AS YOU CAN. AND HOPEFULLY ONE DAY YOU WILL OVER COME.

billbowen

Hi: Fortunately the community that I live in is large enough to have attracted physicians (lung specialists) who are Sarcoidosis doctors. I also have been under the care of physicians in other cities, including Duke University Hospital in Durham, N. C. for sarcoidosis. Duke is one of the top 10 hospitals in the country.
Physicians have not discovered what causes the sarcoidosis disease. It's origin is unknown. And should sarcoidosis leave the body of one who has it, they can not answer why did sarcoidosis leave the body. The patient is glad it left them. In other cases, sarcoidosis will become dormant and could remain inactive in the body for years, then return with a vengeance. The physicians also don't have the answer to why sarcoidosis attacks one person's lungs, another's skin, another's brain, another's vision, and it can attack any organ in the body, in some cases more than one organ. Sarcoidosis is a very mysterious disease. Try not to get pneumonia. (The germ floats through the air we breath.) Sarcoidosis and pneumonia together, I think, will do serious damage to the body. These two caused my health to become worse and it's difficult to recover from the damage to my body. I think pneumonia can cause a Sarcoidosis attack. Sarcoidosis was dormant inside me for years, and pneumonia brought it alive with a vengeance. Definitely keep exercising, even if you can only do a little. Do that. The research about sarcoidosis continues. We all want them to find a cure for this disease. Take the position that you have this disease, but it does not have you. Be determined to beat it. Stay positive, keep fighting. I will too. Bill

IamGrateful

Great responses. Each of you gave me something to think about.


Maybe we don't know what caused us to first have sarcoid happen in our bodies, yet how can we live in our body with sarcoid and without flare ups.

Is it Vit D or E?
I don'r know, but I did start aking vitamin D about 3 weeks ago and haven't noticed a change.

It could be an allergic response. I remember having a response from newly laid carpet at my job. I felt strange and as if I was under a spell when entering the building. My nose ran all day and shortly after that I developed a cough. That progressed into shortness of breath. I went to the doctor and was told I had sarcoid. So the allergic theory works for me.

Is it the sun? I feel better when I have a little sun each day, but not much.

It could very well be a bacteria that triggered the sarcoid effect.

Is it nutrition? I'm scratching my head.

Bill, you have a good comment about excercising. I don't want to but I started riding the stationary bicycle last week to exercise my lungs.
A couple of years after I was diagnosised, I square danced 3 times a week for 2 hours each time. I know dancing and excercising kept me in remission and exercised my lungs. I haven't exercised for over 5 years. That was not my best move.
I plan to do something if it just bouncing on my exercise ball.


J7 How was it determined that your Dad's at end stage lung sarcoid?

It's such a wonderful feeling have each of you as a support team

Together we can remain healthy body, mind and spirit.

sonnyelectric

SIN!

sonnyelectric

VITAMIN D IS A NO! NO!
AND STAY OUT OF THE SUN, E ARE VAMPIRES
NEVER COULD SPELL! JESUS SAID,' KEEPTHE WORD OF GOD,PLAIN IN SIMPLE".

IamGrateful

Okay, I will stop the D for now and pay attention. I'm hear to learn and live.

What I have learned about cause and effect is that it's not instant. If only we could see the effect of each of our causes in life.

Sonny
Could you share more?
I see you said one word SIN
I'm listening

rarity

Vitamin D can cause serious problems for sarc sufferers but if you want stuff on that priscurl will be happy to give you the current scientific info on this. If you like sunlight then being a sarc patient is not in the cards it is a another systemic catalyst as is stress. Now these are things that can cause sarc to re-imemerge if you eat properly lots of veggies and fruits you can possibly help but whether sarc is going to come back is a crap shoot. I wish you well and I am never one to say prayer will not help I believe in God and say He might be the only thing that can. Gene

IamGrateful

Joe,
Thanks for sharing.
I wish improvement for your son.

The antiboitic theory is something that I've thought about.
Many years ago, I was had ear pain and went to see a doctor who placed me on antibiotics over and over again for a year or so. It turn out that I had a jaw problem and it had nothing to with my ear. This was discovered when I saw my dentist. I had TMJ
During that time I was troubled with a fungus.
I'm under the understanding that sun will aid in getting fugus out of the body.
In fact, I read a book today that stated it could take over a year and a half for the fungus to leave the body.
The book stated that fungus lives in a damp area and the sun would dry the fungus out of the body.

Hippocrates
by Brian R. Clement
That the book that I reference.

I like your approach of eating a natural idea. The book offered many suggestion about water, exercise, food and environmental ways to maintain health

I beleive the victory is in giving the body what it needs thus re-establishing health and wellness.

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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