LIFE REVIEW OF EXPOSURES

1 Recommendation

Can everyone please think of all the unusual ways that you may have been exposed to something causing sarc? Since we don't know the cause....i find it interesting to hear personal theories on how those pesty microbes got loose on us. I will start:

Young child
1. Played in public sand dunes near nuclear test area in New Mexico.
2. Swam in the moquito ridden horse tanks on a cattle ranch.
3. Exposed to agricultural pesticides on farm every summer. (Swam in irrigation ditches)
4. Drank non-homogenized dairy milk/cream/butter at dairy every summer.
5. Ate asbestos off the "pop-corn & glitter"ceiling in my bedroom. (Had the top bunk!)
6. Administered grub oil from a laddle during cattle runs (cattle in the shoot)
7. Exposed to 2nd hand smoke 24/7

Teen
1. Used sunlamps
2. Swam in wild ponds
3. Completed a furniture project with harsh wood strip chemicals, stain, varnish
4. Hung out in stinky roller rink with tons of dust .
5. Belonged to auto club...worked on engines and used chemical cleaners/refinisher fluids
6. Tried Hair Dye 1st time....still using it! Brown tones.
7. Exposed to second hand smoke 24/7
8. Developed asthma and rashes.
9. Wore tons of MAybeline make-up.
10. Applied fake fingernails made out of powder & some stinky stuff.


Young Adult
1. Lived near Canadien paper mills/poluted water/air (2 yrs)
2 . Hiked/lived 8 months in Wasatch Front/Uintas/Southern Utah
3. Tons of tick bites on excursion.
4. Tons of campfire smoke exposure
5. Drank spring water with beavers supposedly down stream.
5. Hung out in the natural hot spring in Utah.
5. Had all amalgam removed from teeth, composite replacement.
6. Starved at college...lived on canned salmon and salad!
7. Worked for steelworker union - exposed to heavy metals in canning factory.
8. Ate tofu.

Middle AGe
1. Worked in offices with laser printers, copy machines & central CRAPPY air. 15 yrs
2. Surgery c-section. Epidural introduced to spinal.
3. Several strange miscarriages where fetus attacked by my own system.
4. Extreme stress due to self-employement 8 years
5. Arsenic exposure in city well water....only harmful if you drink it ...go figure.
6. Built an aviary and raising hookbills/softbills.
7. Harvested bricks from a burning demolition site for recycle on my patio.
8. Painted structure with paint containing fungicides.
9. Live in an area with hundreds of fruit and nut orchards...very dusty/ag exposure again!
10. Snorkled at Hanauma Bay with rented snorkle gear....very high tourist ratio...sewage in h20
11. Successfully followed ATKINS diet.
12. BOSS stress: hire'em, fire'em & pay their taxes/fraudualent workerscomp/unemployment
(Those crappy employees could've poisoned me!).
13. Excavated ground in former ag zone
14. Went to hospital with heart attack symptoms....dx sarcoid after mediastinoscopy, heart is great!


Now, I'm sure that all this makes me sound like a nutjob. But what if we all did the same thing? Wouldn't that be wierd? So, tell us your suspicions! If anything else we can have a good laugh!

49 replies

Hi RBDavis,
This has always made sense to me and it would be nice to have a nationwide survey of sarcoid patients. There are three major exposures possibly caused mine 1)smoked 26 years 2) Dad worked at pigiron plant and was exposed to asbestos daily. 14 years ago he died of lung cancer with contributing factor being asbestosis. I remember washing his workclothes and him leaving his boots at the door and he probably had it in his hair til he showered. There's no end to the possibilities of that. Now to 3) I worked at the police department here for six years as a secretary. The first two years I sat within 4 feet of an old Xerox copier - the kind that used the powder. It was exactly three years after I started working there that I was diagnosed with sarcoid. I really think that is the most likely to have caused it. I would have pursued it but I didn't know until 5 or 6 years after I quit there that I found out it could have been the culprit.
Whatever it was I have become a total inflammation with sarcoid, Crohns disease, arthritis and epilepsy. This has all been since I was at the police department. Oh, I forgot to mention that my life has always involved huge amounts of stress which could and probably did lower my resistance.
Maybe someday they will narrow down the possibilities or maybe just find a cure. In the meantime I try to take better care of myself now and I also pop a whole lot of pills. LOL
Thanks for your post and it will be interesting to hear other stories.
Sherryl

Hey Sherryl,

Weel, so far that 3 things in common:

1. cigarette smoke - direct & second hand
2. asbestos
3. machine toner


And ofcourse STRESS!

Hopefully, we will get more repsonses!

Tons of Maybelline Yes
Drank out of polluted rivers yes
around asbestos yes
Dad worked in metals factory
I worked in office of metals factory
I worked in office of plastic extruding factory
I worked in office of printing company (that one really bothered my breathing).
Had a farm, where I did lots of gross stuff in regarding to breathing foul stuff
Smoked for 20 years
Lived in a household for 50 years where people smoked.

Mine I think came from Living in a house converted from a chicken house,
Living in another house converted from horse stables
These were nice houses believe it or not
Had a terrible case of mono when I was fifteen
Have histoplasmosis scars on lungs from poultry dust
Lived by a highway for many years

Take your pick

I will try to remember all exposures to harmful junk. I am sure there are more than what I can remember.

young child

1. second hand smoke
2. drank gasoline (dad was syphoning gas into mason jar that I thought was kool aid, had stomach pumped)
3. several camp fires
4. swam in ky river (dead bodies, lots of nastiness has been found in this river)
5. grandfather had turberculosis
6. had wood burning stove for heat
7. asthma (doctors said it would go away)

teen

1. started smoking
2. experienced and started smoking marijuana
3. still around several camp fires
4. still swam in ky river
5. had wood burning stove
6. used tanning beds
7. used lots and lots of hair dye
8. physically abusive father

young adult

1. worked in a glass plant where I would breathe in glass all night long (even coughed up blood on occassion
2. worked at tile manufacturing company (same as above)
3. worked at airborne express delivering mail and packages (breathing automobile exhausts everyday sometimes 12 hours a day or longer)
4. Formed a drug addiction to crack cocaine for about 2 in a half years, smoked off aluminum can- harmful I guarantee! (I am totally clean now for over 7 years!!!!)
5. smoked since I was 12 or 13
6. used hair dye
7. used tanning beds
8. still around camp fires
9. still swam in ky river
10.lived beside wild turkey whiskey distillery for about 25 years (really stinky at a certain time of day)
11. got a tattoo
12. lots of stress of course I don't know what life would be like without it "I bet it's nice"
13. physically abusive father (I was put on ant-anxiety medicine and depressants at age of 13)

Adult

1. still smoke ( I wanna stop)
2. still around second hand smoke
3. still have stress- duh
4. 2 c-sections
5. boils on body... in to private to mention places while pregnant and while not pregnant
6. 2 unplanned pregancies that failed
7. lots of kidney problems, stones, uti's, infections,

There are probably so many more! This would be remarkable if we have all had some of the same exposures in our lives. I can't wait to read more!

Child
Born to Italian parents on Long Island(one of the highest cancer rates in the world)
2nd hand smoke (although this stopped early)
Ate lots of Italian food, fish, shellfish, crabs out of the South Shore of LI
When did they stop using Chlordane?
Swam at Jones Beach, Long Beach and worshiped the sun
Swam in the bay and ate the clams (even on the half-shell)
Parents had well water and we played in the sprinklers

Teen / Young Adult
Taco Bell
Smokey Nightclubs & Bars
Drank more NY water, more beaches, more sun
Tanning beds
Bit by a tick and diagnosed with Lyme Disease 2x's
Allergic to Penicillin (think I OD'd from the Lyme treatment)
Have many fillings in my teeth

Adult
Worked downtown NYC on Wall Street right after 9/11 while giant fans were placed on each floor to eliminate the smell after the cleanup. Drank Coffee and ate lunch there too
Rode Subways & LIRR
Demanding bosses, career
Full Time Work + 2-3 night classes straight through from undergrad to 2 Masters Degrees
Major Stress
Periods of being on planes on a weekly basis

You could still have Lyme Disease. Google Dr. Ritchie Shoemaker. He has a simple way to test for this and has had success in treatment/elimination of the disease.

First, let me say, you are hilarious.

I had lead paint on my walls
Grew up with second hand smoke
Grew up surrounded by agriculture - wheat, peas and lentils
Tons of cover girl make up and maybelline
Worked on a horse ranch (developed a strong dislike of mules)
Life long asthmatic
Swam and drank from the Snake River downriver from Potlatch Paper Mill in Lewiston, ID
Grew up 32 mi. from Potlatch in Lewiston, ID
Grew up downwind from Hanford Nuclear Plant during the "downwind tests" - I only glow sometimes
Was a chemist - lots of organic fumes
Lived in Salt Lake City, UT and hiked around Kennecott Copper
Several miscarriages
I'm a Special Education teacher - little stressful
I starved in college (lived on carrots and ritz crackers)

Personally, I think it was the tofu.

Take care!
Rachel

Woops -
Forgot tattos - I have 26 vertical inches of tattoo starting between my shoulder blades and ending on my tailbone - took two years - went every three months. Had some done in Salt Lake City, UT and finished in Lewiston, ID.

First can I say for having miscarriages and the baby attacking your body.....What blood type do you have???? What blood type is the father?????
When I am pregnant, I have to get Rhogam injections during and after the pregnancies with the exception of my daughter who has blood type O Negative like mine. If you are RH negative and have babies with RH positive blood, this can happen without Rhogam injections. Of course with all pregnancies you would have to have the Rhogam during as we do not know baby's blood type, but you would not need one after if baby has same blood type. Not sure why this happens with RH negative moms. It is more common after 2nd or 3rd pregnancies. Usually the first baby is fine.
Ok. Exposures
1. 2nd hand smoke as a child.
2. constantly sick as a child, teen and young adult. if it was out there, I would catch it. I gave the chicken pox to my kids when I was 22. UGH!
3. Well water (not in NY though, in MA)
4. ton's of Maybelline, cover girl and other cheap, nasty make up as a teen!!!
5. Still color my hair!!!
6. Had A nasty case of mono at age 14 that lasted about 6 months.
7. Smoked for @ 20 years with the exception of during pregnancies. (finally quitting now with Chantix!!! God bless the genius who created this one! it works!!!!)
8. Exposed to toxic black mold in my mothers house from a roof job gone bad on a regular basis while caring for her while she had COPD. Doc believes this mold caused both her COPD and my Sarc!!!!

Hope some of this helps!!
Be Well
Dawn

P.S.
Aside from the toxic mold, I have always wondered about the long term mono as a possible cause. I saw a few others who had it too. would be interesting to see how many more had it for more than the normal few weeks!!!!!

Lots of second hand smoke growing up (common theme here!)--I remember being in a car with two parents (smoking) and four kids, windows rolled up. I complained about it then!

Ate raw meat in college--my favorite was the "cannibal burger" with raw hamburger, egg and onion!!!

In early 20's cleaned wax off apartment tiles with straight ammonia--thought then it might be a mistake and certainly think so now!

Brother diagnosed with MS when we were both in 40's--hmm--he thinks it might have been from handling mercury in chemistry class. Wonder about the connection. At least I didn't take chemistry!

Oh, and of course I got way too much sun, used sunlamps and wore lots of cheap makeup my youth. And I use fake tanning lotion now!

When my daughter was about 2 months old, she was hospitalized with a viral bronchiolitis. A few months after, she started having rashes. Since then, she has been diagnosed with early-onset sarcoidosis, but doctors cannot say if the bronchiolitis caused her sarcoidosis, but they don't eliminate the possibility.

Young child
1. Exposed to extreme 2nd hand smoke 24/7
2. Swam in rain water run off from commercialized areas uphill
3. Swam in polluted ponds
4. had seasonal allergies
5. Many tick bites
6. Inhaled smoke from burning Poison Ivy. Face, eyes, mouth, throat, nose, lungs, etc.
swelled. Looked like a pumpkin. Was given Prednisone
7. Lots of campfire smoke
8. Had almost all my teeth filled with amalgam fillings
9. Had pet parakeets

Teen
1. More second hand smoke but was able to escape it better
2. Swam in not so polluted ponds
3. Refinished furniture
4. Hung out in garages and worked on cars. Solvents, cleaners, exhaust, etc.
6. Had Rheumatic Fever and many incidences of strep throat
7. Heart murmur discovered at 16
8. Got my first tattoo at 14
9. Worked as a chimney sweep. Inhaled lots of creosote
10. More campfire smoke
11. Experimented with drugs. Never seriously

Young Adult
1. Two children by c-section
2. Gestational Diabetes with second pregnancy
3. Adkins Diet
4. Gall Bladder removed
5. Underwent two knee surgeries
6. Had weird flare up of osteoarthritis in one knuckle. Resolved but left knuckle disfigured
7. Worked with chemicals in surgery and doctors offices (formalin, Cidex, etc) 15 years
8. Moved from Washington, DC to Montana
9. Youngest child was diagnosed with Type 1 Diabetes
10. Donated platelets
11. More tattoos
12. Strange problem with skin around eye. itching, dry, flaking skin, eye watered excessively. Lasted a month or so. Doctor could not diagnose. gave me steroid cream. finally resolved, came back once more, laster another month.
13. Breast reduction

Middle Age
1. Developed skin rash on ankle, beside nose, diagnosed with Rosacea
2. Live in remodeled chicken coop, constantly under construction
3. Blew out knee skiing, two MRIs on knee
4. Had third and fourth knee surgery
5. Had anaplylactic reaction to Ancef pre surgery on the third knee operation-surgery rescheduled (This was not a fun experience)!
6. One week later underwent the surgery. When coming out of anesthesia, clamped my teeth on the LMA (mask with tube in throat for breathing) and occluded my airway. Anesthesiologist had to put me back under deep to get me to release. Caused negative pressure pulmonary edema.
7. Was rear ended and suffered whiplash and bleed on brain. Underwent MRI and MRA. Had to have a disc replaced in my neck and a cervical fusion. The replacement disc was from a cadaver. Experienced reaction to pre surgery antibiotic. Red Man Syndrome they call it.
8. Started experiencing chest pain, shortness of breath. Had full cardiac work up - including cardiac cath and chest MRI. Everything there was fine. No explanation for symptoms, which came and went. I think the Dr. thought it was stress, which I did have my share of!
9. Developed fever, joint pain, swollen ankles, erythema nodosum, was placed on prednisone, no diagnosis.
10. Rheumatologist diagnosed Sarcoidosis one month later.

I think it's living in a chicken coop...

Now if there is someone who can make sense of it all we will have a study.
Barb

I grew up in East Tennessee. There is a lot of Sarcoidosis in the Southeast.

Young Child
• We had a coal burning stove for heat and a wood burning stove for cooking
• I had lead paint on my walls
• Our drinking water was from a spring at first and then a well
• I grew up on a tobacco farm; the younger children dusted the small plants (with arsenic and DDT
• As we grew older we helped to top the tobacco and remove the suckers. Our hands would be black with the tar from the tobacco.
• We raised chickens.
• We drank non-homogenized dairy milk/cream/butter. It was all we had.
• We swam in the creek and We played in the barn
• I was exposed to 2nd hand smoke 24/7 from both mom and dad
• I had many Tick bites as well as leeches from the creek where we swam
• Every day on the way home from school we drank water from a stream that came from a spring. Now I think the cattle grazed upstream from there
• I had Rheumatic fever as a young child
• I had several cases of Pneumonia before I was five
• My Grandfather had TB of the bones

Teen
• Swam in creek.
• Started wearing make up
• Spent every Wednesday and Saturday evening and Sunday afternoon at the roller rink with tons of dust.
• Exposed to second hand smoke 24/7, now I got married and my husband smoked also.
• I had the Asian Flu, hospitalized for a week

Young Adult
• Worked in a factory with a lot of dust from cast iron parts (5 years)
• Three miscarriages
• Married at fifteen barely had enough money to make ends meet
• Raised three children, worked full time and went to nursing school
• Refinished the woodwork in old house, tore all the wallpaper off and refinished walls and floors.
• Many fillings in my mouth

I worked in a delivery room for 5 years where the gasses were delivered from open cannisters

Middle Age
• Worked 50 – 60 hours a week as a nurse for 20 years in ICU

We mixed our own chemo without hoods
• Left that job for a very stressful job, left it after four years and got new stressful job
• Had to have my tonsils out at 50 due to fungal infection
• Had shingles on the facial nerve
• Worked in office where we discovered toxic black mold only after I was sick for six months
• Diagnosed at age 50 with Asthma

This is a good idea, I am seeing some patterns;

Up till age 28:

Lived in town area - Swam in the Irish Sea since I was small -
Had Shingles on my back
Cruel Dentist gave me 8 amalgam fillings at age 12
Diagnosed with Asthma at 19
Dad was a sheet metal worker
Smoked from age 25 ( late starter, boy do I regret it)
tried marjuana - didn't like it
Worked in animation in paint dept for 3 years - ( some of that paint stank!)
Painted for a living for about 5 years ( some of that paint stank also)

Age 28 up till now

Moved to the country
Moved to very damp and mouldy house
Suffered worse Asthma
Diagnosed with pernicious Anemia age 29
Drank well water

Age: 30
Stopped smoking for 1 year - Even worse Asthma - went back smoking at 31 still smoking
moved to a slightly less mouldy house - Although the bedroom was riddled with black mould
Keep Hens, Ducks and Donkey's
Both Donkey's have Sarcoid - one came with it the other developed it recenlty - both after my diagnosis.
Look after wild birds - change their feeders twice a week -
Mice come to stay in the house every winter, haven't found a humane way to get rid of them
Have had tick bites twice -
Co Worker diagnosed with Sarcoid
drink water from a scheme - the water comes from a well, I am not convinced of its quality.

I can't think of anything else. I don't wear make-up. And I can't dye my hair because the dye stings the head off me!!

All the best
S

I forgot to mention that I swam in chlorinated pools alot as a child, including on a swim team, and that I swam for exercise in my 30's. This Q & A with Dr. Andrew Weil is sobering:

Q What precautions should parents take for children who swim a lot, particularly those on swim teams? Is there a higher incidence of chlorine-related health problems among swimmers? Does sunblock prevent the skin from absorbing chlorine?

A (Published 7/14/2006)


Chlorine used to disinfect swimming pools is a health hazard and may trigger asthma in children. Among adults it has been linked with other health problems including bladder and rectal cancer and may increase the risk for coronary heart disease.

A Belgian study published in the June 2003 issue of Occupational and Environmental Medicine, a British journal, suggested that an irritant released when chlorinated water reacts with urine, sweat or other organic matter from swimmers increases the risk of asthma among children who regularly swim in public pools. The researchers took blood samples from 226 children who regularly swam in indoor pools. They found that the youngsters had accumulated high levels of an irritant called trichloramine, a substance believed to set in motion a process that destroys the cellular barrier that protects the lungs. Other blood samples showed that levels of trichloramine were elevated even among people who merely sat at the side of pools and didn't swim.

Sunblock won't help to protect you or your children against the effects of chlorine, but you can make a difference by lobbying local officials and pool managers to replace chlorine in public pools with safer, more modern disinfection methods. I use a silver-copper ion generator in my own pool that works very well. Other alternatives are available and worth exploring. Chlorine disinfection of water is obsolete.

Andrew Weil, M.D.

After reading other emails I did leave out somethings:

Lots of tick and chigger bites

Bitten twice by brown recluse spiders

Stung many times from yellow jackets when I caught a nest in my clothes when I was about 9.

Stung between toes by bumble bee (that hurt)

Worked in chemical companies office, where the factory made chlordane and malathion.

I too agree mono has something to do with this. Had a bad case for 6 - 8 months.

Lots of fillings, exrays, etc.

Have nerve damage in my face due to a stroke when I was 49 - ten years ago.

I'm sure there are others I don't remember.

Pat

I won't submit my entire list, because they are very similar to most everyone that commented...lol, but seriously

I had asthma as a kid, drank well water, which I still prefer over city water, and had constant sore throats/strep until I was 15 yrs old and had to have the ole tonsils removed at that age. I ran a fever for 2 months over 101 and it took a Childrens Hospital to figure out where the infection was coming from...the tonsils were the culprit!

My Dad had polio when he was 21 yrs old and his father did not believe in the polio vac/so my Dad never got his. When they removed Dad's tonsils at 21, after they figured out he had polio they believe the tonsils were the source that would not allow the polio to escape his body. The doctors removed his tonsils in tiny pieces because they were so rotten and they allowed the polio to spread throughout his entire body. He was paralyzed for many months.

Dad died 3 yrs ago with Post Polio Syndrome and Lung Cancer. It's hard to say what causes this dreadful disease, (Sarcoidosis) but a complete study of this nature is a beginning! There needs to be some doctors willing to step up to the plate and ask the proper questions, and scientists, and patients willing to allow themselves to be a guinea pig to do research on, and of course people like us willing to give personal information on our medical and personal history.
I know that the Sarcoid Foundation has done many great things, and they should be commended for all that they do, we just need more help on a National Level, but then again...all of us who have this disease, if your not in remission...who feels like it? Catch 22

Thanks rbdavis172...
Terri

I'm known for thinking outside of the box, so rather than thinking that sarcoid is due to some hazardous element or activity in my life, I am remined that sarcoidosis is .... "an unflammatory disease .... it causes heightened immunity, which means that our own immune system .... overreacts resulting in damage to our organs". In otherwords, its not a substance attacking our body, its our own immunity system.

So in my way of thinking I'm less concerned about the things I've be around than I am about what would cause my immune system to "overreact?" Ok... what might have caused this in mylifetime? (granted something we've encountered could have caused our immune systems to missfire)

(1) for many many years I took vitamins and extra vitamin C (immune system booster, did we boost our imunity to much?)
(2) I was raised during the age when Dr's gave out antibiotics whether you needed them or not
(3) I was a type A driven person, always on adrenelin, forcing my body to go the extra mile, I've worked more 70hr weeks in my 51yrs of life than 40 hr weeks.
(4) I believe that most sickness is in my head, I would typically just push thru whatever sickness tried to take me down. I have not missed 20 days of work in my lifetime due to "sickness".

Perhaps this outside the box thinking will spur some more thoughts ....?

harmles2

Dear Harmles2
Good thought! In my post, I had listed how I spent much of my childhood and earlier adulthood sick!!! I practically lived on antibiotics!!!! You may be on to something there. I sure do remember an awful lot of the gross pink stuff as a kid. Sore throat, heres the pink stuff... Funny thing though, I never even had 1 confirmed case of strep and still have my tonsils at age 34. HMMMM. My daughter had strep (confirmed.) about 15 times by age 6 and because of that, now no longer has tonsils. No more sore throats for her now!!! Thank goodness.
I am also still leaning toward the extra long bout with Mono too, but I did have Pneumonia several times during early childhood(more antibiotics) and many cases of bronchitis too (even more antibiotics). It really is sad, because many traditional antibiotics no longer work for me, and I seem to have developed allergies to ones that I could take previously. Also, when I now really need an antibiotic for long term, my body rejects it by making me sicker than what ever I am taking it for in the first place. For example....I was taking IV Clindamycin for a bone infection. Needed to take it for at least 4 weeks. My body started rejecting it after 3 weeks and I had to have the PIC line pulled because I got so sick it even started affecting my liver and gall bladder. (they are thankfully ok now that the antibiotic is out of my system.)
So yeah, I am with the outside the box theory too. It does make a lot of sense!

Be Well
Dawn

Mmmm. Might take me a bit to remember.

Young Child
Exposed to second hand smoke
Exposed to marijuana smoke
Lived near GE plant
Probably swam in questionable water
Camp fire smoke
Several bouts of pneumonia
Had tonsils removed
German measles
Chicken pox
mental, physical and sexual abuse
pet cats

Teen years
Probably more swimming in questionable water
More pneumonia
second hand smoke
started smoking so direct exposure to cigarette smoke
some sort of weird gas in an old barrel my step father broke open
exposure to chickens, cows, pigs and other farm animals
played in the creek
played in the barn
wood stove smoke
camp fire smoke
allergies
got pregnant 2, one c section
raped
extremely stressful school situation
death of several very close relatives. Great Aunt to whom I was close. Both grandmothers, grandfather and biological father.
Death of a friend younger than myself
Took up smoking marijuana for a couple years
Swam in Gulf of Mexico
Wore makeup
pet cats
dogs
more mental and physical abuse

20s
Married and divorced abusive first husband
had two more children
another c section
tubaligation
Still smoked
still wore makeup
remarried
homeless shelter
pet cats
more pneumonia
Lots of stress

30s
surgery for hernia
still smoked
more pneumonia and bronchitis
pet cats
exposure to mold
husband worked construction
cross country trip
Yet more stress

40s
Still smoke
pet cats
lots of stress
divorced
live near air force base

I'm sure there is probably more but that's what I can think of at the moment.

Tati

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