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Renovating a house and sarcoidosis

Benoit
  • By Benoit
  • Posted September 18, 2009 at 3:36 am · 21 replies
  • In Triggers
  • Shared with the public
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Hello, I had an untreated pulmonary sarcoidosis in 2006, which had healed by itself. I worked at the time in a factory Peugeot (the car brand French), with all the toxic substances we imagine. The symptoms stopped when I left the factory. Last year, my wife and I bought a ruin to renovate, in Ardeche (South of France). I worked for one year, symptoms of sarcoidosis returned 6 months ago. Are some of you have noticed reactions to concrete, sand, dust??
What is odd in my case is that the bone sarcoidosis (diagnosed yesterday) reached the spot where a stone dropped me a few months ago (on the tibia as shown in this photo: http://cjoint.com/data/jnon52HbrO.htm ).
Thank you for your testimony.
Ben

Explore topics in this discussion:

Asthma Cancer Surgery Pulmonary sarcoidosis Claritin Pain Prednisone Radiation therapy Sarcoidosis Allegra

21 replies

Rougeaud

One day medical science might even be able to draw up a list of substances that can induce sarc in susceptible people...In the meantime, I can tell you that my wife and I rebuilt a house up here in Quebec, Canada between 2002 and 2006-ish. I know I must have ingested some of all these substances:
a lot of regular wood dust (spruce and pine)
treated wood dust (arsenic impregnated?)
butane (from urethane insulation foam)
glass wool insulation fibres
mould spores
bleach fumes
insect repellent (deet)
carbaryl insecticide (organophosphate)....
and yes - I did not always wear a suitable mask

Take your pick! My (known) sarc started in 2005 in various places, but was only diagnosed in the lungs a bit later. Now my lungs appear to be OK and I am off all meds - but I do have issues with the top of my throat and my eyes.
My wife has also been unwell ever since, but her symptoms are different. She already had compromised lungs from successful radiation therapy for Hodgkins lymphoma very many years ago. Now she often has no energy, trouble breathing, and pains all over. Great, isn't it? Yes, the beautiful house is now on the market.

The best of luck to you.

KateL

HI, I have sarc and calcifications in my lungs.
I notice my asthma is much worse during rainy (i.e. moldy) seasons here in Florida. I just had all my carpets pulled up and replaced by wood floors and I put air filters all over the house, replaced my dusty couch with a leather one. Result? I am breathing much better according to my pulmonary doc. It can be a combination of factors, I'm sure, but the less we are exposed to triggers of inflammation, the better. I also notice dust is just not good for you! When the floors were being replaced, I moved out of my house.
Good luck,
Kate

exultant

Hi Benoit,

I was renting a basement apartment while the owners were remodeling the house above. During that time I had problems with water in the ceiling, floor, storage area behind the apartment and part of the ceiling started to fall in my office. I started getting sick and got out of there before really serious symptoms started. This was at least 3 years before I became ill.

When I became ill, I ran into a woman at the rheumatology clinic who with her husband had renovated a house. She became ill during the renovation. It destroyed her marriage and she couldn't live in the house.

Best Wishes,
X

Rosey2

.. I dont necessarily think its odd that the bone sarc started at the site of your previous trauma or injury, after all that's where the immune response occurs which creates all this damn scar tissue .... it kinda makes sense don't ya think or am I missing something?
I hurt my right shin six months ago and have had problems ever since in that area ... also have some skin sarc there now.

Also I previously had two biopsies for skin sarc diagnosis and both areas got much worse after the biopsies.. ...................

so am not going to let them do a bone biopsy to determine that its in my leg, just in case!

Benoit

YES IT IS making sense, for me! But my doctors say it's a coincidence! It was after a biopsy (to see if it was cancer) that my leg began to swell, a month after it was emptied from 1 liter of purulent matter. And as I was on steroids, wound 20 centimeters on the calf has not healed, the skin was necrotic so removed, and I have a transplant on Wednesday to replace it.
And since I was left with an open wound for 1 month, I caught a staphylococcus!!!
Do you have a hole or something like me in your shin?
Thx Rosey

I conclude from all this evidence that the presence of dust can affect the onset of symptoms, but not specifically a chemical compound or another?

Thx to all

BUNKIE

Hi
I can't determine what I was breathing at the time I got Sarcoid..it was a mix of toxic job air quality, apartment swamp coolers with mold and forest fires during a vacation to Taos NM all in 1 year. I was treated and went into a 2 year remission but when I moved to Michigan I started remodeling an old home with my ex fiance. We had serious water damage and the house was constantly being treated for mold. New carpets were installed and wood floors finished. The entire house was painted with regular oil paints and the entire ceiling in the upstairs had to be replaced. I stayed in the home for most of the renavation. When it was done I had the worst flare up of my Sarcoid ever and I am still not in remission. I am now in a different home that needs some work done and plan to do 1 room at a time with safe products and move out for several months during the process.
I totally believe that although there is no proof it ....matters what you breath.
Bunkie

Benoit

I totally agree, the question that remains is: Is this the particles (silica, microscopic fungi, aluminum in deodorants) that our lungs do not support or is this some chemical elements (solvents)?
I hope you get out of this second test!
Ben

Angelfox

We lived for 34 yrs in ahouse that had problems with water in the basement which caused mold to grow. We bleached it frequently but it still came back. Also the house was built in an edition where farmground was across the road. the farmground was sold and more houses were constructed on that site.
We had a well that we used for drinking, bathing and laundry. The farm was very old and I suspected that DDT had probably been used there before anyone knew how toxic it was. Many peope have died of rare things over the course of the years that lived on our road.....told my sarc Dr, but he said they just don't know.

rascalsmom

There is a recent (not brand new) scientific paper published that suggests what potential exposures are linked to developing sarcoidosis. The most recent one and another recent manuscript are cited below:

Etiology of sarcoidosis.
Chen ES, Moller DR.
Clin Chest Med. 2008 Sep;29(3):365-77, vii. Review.

Potential etiologic agents in sarcoidosis.
Moller DR.
Proc Am Thorac Soc. 2007 Aug 15;4(5):465-8. Review.
PMID: 17684291 [PubMed - indexed for MEDLINE]
Related Articles Free article in PMC | at journal site

Old houses/building renovation are definitely a possible risk factor. My spouse had the same exposure - we renovated our old house too. Rascalsmom

BUNKIE

I inherited my home from my parents and although I have thought about moving to a newer home this one is paid for.
So the question is how does one renovate with Sarcoid? I mean what can you use? I have been researching all the newest GREEN products and I am perplexed. I need to do some things but have to be honest I am scared. There is hardwood under the old carpets but what do you have them finished with?
Do you paint with No Voc paint etc? Just curious as to what worked for some.
Bunkie

KateL

Hi Bunkie,
Most products will "off-gas" and release toxins for a while. I had new hardwood floors put over the existing hardwood just because it was easier than refinishing the ones under the carpet. The hardwood I used had been pre finished. But still my contractor insisted that I move out when he pulled up the carpet and put the floors in because he didn't want me to breathe the chemicals or the dust and mold from the old carpet he was pulling up. (He heard me cough!) In one room I put in bamboo floors which were pre finished as well but I did not let him put any extra finisher or product on top of those.
I also have painted but it doesn't seem to affect me.
Now having the new floors has improved my breathing.
Just stay away from dust and mold! and of course, chemicals.
Hope this helps.
Kate

melissa_e

My sarc symptoms started after moving into and beginning renovation on an old farm house (rumored to have its origins in an old chicken coop). I have been here 7 years and the symptoms started after the first year here. There was ancient dust in the walls we tore out and sawdust everywhere and heaven only knows what else for several years. Most of the major renovation is done, but the sarc lives on!

RWV

I'm five years into an extensive ten-year restoration plan on my 1904 house, and I've mentioned this to all of my doctors. Having said that, I think it's important to remember that sarkies who have NOT lived with renovation or construction are not likely to reply to this discussion, so the "results" may seem skewed. I as much as anyone would like to know what caused or contributed to my sarc, but I'll probably never know. For me, it's been counterproductive to spend a lot of time dwelling on it.

Great-gram

Hi! Just read all the comments about the provoking thoughts on the effets of remodeling. I observed that there was one key element that was missing, that would definitely affect everyone in the household. That one key element is lead. Although it is not common for adults to get elevated lead levels, I have know of entire families, especially the children that have been affected. When remodeling, be sure that there is no lead paint in the house, especially from the 1970's back, and sometimes later. Sanding spreads small particles of dust into the hair. What is even worse is if you vacuum in the areas where the lead particles have settled. The vacuum will make them even smaller and those fine particles will be literally everywhere. It can contaminate the whole house. In the USA there are usually health centers or the board of health that can check. For small areas there are special kits that you can purchase. Lead can get into one's system by inhaling, absortion through the skin, or ingested. The CDC and other reputable Health Agencies have accurate information. Houses can be unfit for habitation if the lead spreads through the house. Children are more likely to show symptoms, but anyone exposed to large amounts of lead should be tested. It is also stored in the bones, so when the immune system is compromised problems can occur. Any lead in the body is unacceptable and through the years they have lowered the amount that they feel will cause permanent problems, particularly in children. Check it out. Be safe. God bless! Great-gram

Benoit

Hello, thank you for all these answers! The common point between us would be more the mold.
Great-gram, in France, when you buy a house, the seller is obliged to provide you with a test of presence of lead by an expert. When I bought my house ( http://cjoint.com/?jtiFzzv2ua ), the test was negative. I'm not saying that some patients may be sensitive but in my case, that's not it.
The thing that brings people closer together is the mold and dust! It does not explain everything, but it is a start.
A French study in 2002 said that silica/ sand was the only responsible for sarcoidosis. I think this theory has been abandoned.
Thank you all for your answers

gonenatural

Hi Ben

During my 1yr+ time here many have been dx'd with sarc aft an incident, either child birth, surgery, car accident, or you, a rock fall on you. Coincidence? Maybe. I have read on many other sites that saw dust, cement dust, etc is so bad for your lungs. I don't wear a mask either.
I use to replace water meters in people's homes/businesses and even though their place is lead free I have found that from the city/town up water line up to there's is usually still lead and the city/town will not replace do to the high cost. So you may still have lead pipes.
I have renovated 2 floors before moving here and became more sick aft doing so. Pressure treated wood is the worse but the alternative safer stuff is still so expensive. Pressure treated wood was to be banned where I live but due to high cost of the other stuff pressure treated is still readily available anywhere.
I have a mobile home so carpets are a must or else your feet and home will be freezing cold.
It is so bad for me and my female dog, who is allergic to almost everything and everything a carpet holds. I bought Mrs. Beasley, a robot vacuum. She works well in my ex's home but not mine. I double insulated the carpets and didn't properly install them so they are not super stretched out like they should be.
I have learned to get rid of lots of knik knaks, less dusting to do. But my home was turned into a book store, over 1,400 hundred books, magazines, etc and over 400 dvds and 400 software. I try to keep what I can in closets and what is on bookshelves I move often to keep dust off of them as I sell.
Dr's like to blame my parakeet, who I had for 9 yrs and coughing last 2 yrs. My parakeet now gone for 2? months and no improvement and allergy test came back fine, which is still not 100%.
Glad you finally got a dx. And you are not crazy to think of how that happened. You had a weak spot and your body attacked it wrong. The dr is wrong for thinking that way.
Best to you,
gn

DMS

Is it worth going to an allergist to find out what is the trigger /allergen that induces a flare up? I have chest pain (since I have lung sarcoidosis) especially on days when mold counts are up. I also have increased symptoms during ragweed season (Aug - frost). I've been trying to track this. Seems to help if I do Claritin or Allegra (antihistamine) during this time. Any thoughts on this?

DMS

BUNKIE

DMS
I would love to be allergy tested but they say the prednisone alters the test so can't do it.
If the Claritan helps it really could be allergy related.
Bunkie

CC

HI, although my docs think I have probably had sarcoidosos of the lungs for 20 years, I never had a "flare" until we remodeled our house. The flare lasted about 8 months. Up until then, when I got short of breath exercising etc, I just thought I was out of shape even though I am not overweight. When i had my mediostinoscopy for diagnosis they cultured for pretty much anything that might have been house renovation related. They didn't come up with anything, but my pulmonologist seems to think that is definitely what started the flare.

nascarfan24

Im putting another addition on our house since march.I got one more room to sheetrock and finish.Ill be starting that room this weekend.Each time i get a room done im sick for weeks even wearing a mask while rocking and spackeling.The insulation is the worse thing .My problerm wearing a mask is i cant get enough air in feels like im suffocating then i take it off to get a breath of air and i breath in everything thats floating in the air.A freash air system that i painted cars with would be the best but how can you work with dragging a hose around the whole time.Or pay someone to do it but the satisfaction of doing it yourself feels alot better.I guess,lol.

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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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