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BobL
17th Aug 2016, 12:36 PM
Recently I found out I might have something called Sarcoidosis which has been linked amongst other things to metal work lube coolant so I thought I would post about it here.


Its a relative rare condition with something like 10 people per 100, 000 having the disease.
It’s slightly more than this for women and less for men, with the most common ages being in the 20 to 40 year old age group.


My Sarcoidosis diagnosis is not confirmed but I have a number of the symptoms including dozens of small (2 to 8mm) nodules in my lungs, chest cavity and some in my abdomen, general fatigue, a rash on my feet, and aches and pains in my ankles and feet. Blood tests show the nodules are unlikely to be cancerous although a biopsy is required to confirm this. Sarcoidosis usually reduces lung/organ function which I don't have although my general fatigue prevents me from telling if my lung function is poor or I am just generally unfit.


The causes of Sarcoidosis are unknown. Although it is not a auto immune disease it is like an auto immune disease resulting in over active immune cells attacking some sort of bug that has entered the body and causing inflammation and then forming nodules at the inflamed sites. The inflammation become fibroid and even calcified. It can affect most organs of the body and if enough of these nodules develop it may cause organ failure. In most cases it goes away by itself but in a few cases it may even require organ transplants and a few % of sufferers can even die from it.


One cause is thought to be combustion products with poorly ventilated wood burning stoves, fireplaces etc suspected. Firefighters in general and the firefighters who were at the world trade centre collapse in particular have one of the highest incidences of it. One cause I keep thinking of is being constantly bathed in two stroke smoke from using a chainsaw in the last few year


Bugs that grow or travel in or with green wood have also been implicated hence the higher than normal incidence amongst timber millers, while cabinet and furniture makers using dry wood are much less likely to get it.


Another know cause is the bacteria that grown in coolant lube used in metal workshops and as I have spent a more time in the metal working end of my shed in the last 3 years than using a chainsaw, so I’m wondering if this might be the cause. I have always used the antibacterial lube and always over pumped it to aerate the fluid to reduce the growth of anaerobic bugs .

Anyway was just wondering if anyone else knew others that might have this.

KBs PensNmore
17th Aug 2016, 10:20 PM
Bob, sorry to hear of this. Could you please change the font, as I found it almost impossible to read, I don't know about anyone else?
Thanks for changing the Font.:2tsup:
Regards
Kryn

BobL
17th Aug 2016, 11:35 PM
SO far I've had two CATs and an MRI scan and had a PET scan today (Positronium Emission Tomography) - sounds like something from "Back to the Future".

They inject you with a highly radioactive but short-half-life sugar solution.
Park you in a dark room for an hour - no music or stimuli as this sends less blood/sugar to the site of lumps.
Then they make you pee out the excess radioactive solution.
Stick you inside a large Gamma ray camera like a CAT/MRI machine.

The radioactive sugar gets preferentially draw in by any any lymphomas and radioactively decays by emitting a positron (positive electron)
On encountering the nearest electron (they are opposite charge so are attracted to each other) they annihilates (the are after all matter and antimatter!), simultaneously forming two gammas that move off in the opposite direction.
The Gamma camera is a segmented 360º camera so it sees both gammas, and by timing slight differences in arrival times pinpoints a location/source.
From this the camera and computer builds up a 3D image of the critters.
I used to lecture about the physics of this stuff at Uni so its rather weird being on the receiving end .

Next I have to go for blood tests next and the lung function tests

My appointment has been moved by the specialist from late September to September 1 - don’t know what this means.

Other than mild anxiety and the growing hole in my wallet I feel quite OK.

Oldneweng
18th Aug 2016, 12:56 AM
I have suffered from this for over 20 years.

Maybe lots has changed since I last did any research. I was told it was likely caused by a serious lung infection which I have never had.


Although it is not a auto immune disease it is like an auto immune disease resulting in over active immune cells attacking some sort of bug that has entered the body and causing inflammation and then forming nodules at the inflamed sites.

Auto Immune Disorder? Everything I have read just says it an Auto Immune Disease. Disorder is probably more accurate.

My understanding is the bugs are generally long gone and the Auto Immune System doesn't realise this. I think it sees the inflammation as a threat.

I have read on the internet that some people think that maybe 20% (from memory) of the population have it to some degree. Also about 2% die. The ones who die I believe mostly don't last very long at all so after 20 years I don't think it will kill me, except maybe shorten my life a bit due to my body being less able to cope with old age. Then maybe I will get better.

Interesting about the wood cutting and wood fires. I have never heard of this connection previously. I have been involved in cutting firewood for over 30 years. This has just reminded me of something. The last house we owned was in a town that had a timber mill and in fact we lived right in front of the mill. We shared a boundary fence. We spent years fighting the company about sawdust. We had the EPA doing tests. There was huge amounts of sawdust flying around at times.

Dean

Oldneweng
18th Aug 2016, 01:16 AM
I understand the anxiety. I spent 4 months on tenderhooks. As I said it was pretty extensive.

The PET scan sounds like a new one to me. I still have 2 specialist visits per year with lung function tests, but that is about all.

I had to travel 400km to Adelaide for all my appointments. They did try to book them on the same day or early next day. That knocked a hole in my wallet.

My doctor looked at xrays on Friday and by Monday I was sitting in the specialists waiting room in Adelaide. Luckily my doctor knew the specialist. How else do you make an appointment at 6:30pm on a Friday.

I have forgotten most of the procedures I went thru.

Dean

BobL
18th Aug 2016, 07:50 AM
Thanks Dean, It's always "good" to hear from a someone else that knows something about it and seems to be handling it successfully.

We have a relative who is a research type of MD and can did up all the latest research very quickly. It was from an article he provided that I got the info on sawdust and lube coolant exposure and that it is not a true Auto Immune disease.

Oldneweng
18th Aug 2016, 11:24 AM
We have a relative who is a research type of MD and can did up all the latest research very quickly. It was from an article he provided that I got the info on sawdust and lube coolant exposure and that it is not a true Auto Immune disease.

That would be pretty useful. It is hard to know what to believe from the net. Actual medical data was pretty scarce when I was diagnosed. My understanding is that not a lot of research was being done with this condition.

I have also read about a couple of wayout quack type remedies. One involved massive doses of antibiotics.

I wish you the best Bob.

Dean

Abratool
18th Aug 2016, 11:43 AM
Bob
Sorry to learn about your problem, hope things improve for you.
I will be using more face masks, when chainsawing, however who really knows where these problems originate ?
Bruce

BobL
18th Aug 2016, 12:25 PM
Bob
Sorry to learn about your problem, hope things improve for you.
I will be using more face masks, when chainsawing, however who really knows where these problems originate ?
Bruce

Thanks Bruce,

The thing is I actually feel pretty good. No problems with lungs.

I do have arthritic like symptoms in my knees/lower legs and ankles but they are slowly easing after doing 15 minutes of Taekwondo stretching exercises morning and night time.
Also got out the rowing machine and and doing 15 minutes of that (2.5 km) twice a day plus walking the dogs up to 5km if its not raining.
4 weeks ago I could not get up of the floor without using my arms, now I can at least do that albeit with a bit of pain.


I will be using more face masks, when chainsawing, however who really knows where these problems originate ?
Yeah, I've been making mental lists of various exposures going right back to my 20s when I did concrete demo work inside high rise basements with a big pneumatic hammer for weeks on end with nothing more than a wet rag as a face mask. All those chemicals I was exposed to at work for the 3 months when they had the lab extraction fans running backwards and my skin turned pale green. Then the MDF exposure when I lost my sense of smell for 6 weeks about 15 years ago, chainsaw work, yada yada. . . . .

It's probably best not to think too hard but I would still like to know.

KBs PensNmore
18th Aug 2016, 04:39 PM
It's probably like how some people get Cancer and others don't. I lost both Parents and Brother to Cancer, but my Uncle and Aunt passed away from old age???
As you say "It's probably best not to think too hard but I would still like to know."
Regards
Kryn

BobL
23rd Nov 2016, 08:47 PM
Since my last post on this I have had 4 more sets of blood tests and 2 bronchoscopies (stick things like micro ultrasound cameras etc down the throat into lungs) under general anaesthetic to help retrieve inflamed lymph glands.

The first bronchoscopy failed as they tried to retrieve glands through the lung wall using a needle but the glands were calcified so the sampling needle would not penetrate the core of the glands. The second attempt sent the same ultrasound camera down into the lungs an viewed the enlarged lymph glands through the lung wall. Then they opened up a key hole under my voice box and went down under my sternum and in between heart and outside of the lungs. Outside they had an X-ray machine used to guide the tweezers/sampling needle and scalpel they had sent down the key hole and they peeled a couple of the enlarged lymph glands off the outside of the lungs and sent them off for testing.

Last week I got all results back bar one. No Lymphoma, no TB, no nothing they can say definitively, and so they call whatever remains sarcoidosis.
The one test I have no result for is a trace metal analysis which takes 4 months. This is to determine if I did have an over exposure of some kind of metal dust which is looking like the most likely cause.

No treatment, as I am not feeling any obvious effects and am in no danger, just blood tests every 3 months and PET scans every 6 months for the foreseeable future.

I feel no better or worse - just a bigger hole in my wallet than usual 0 thank goodness for the medicare safety net.

Oldneweng
24th Nov 2016, 07:44 PM
Sounds familiar. I went thru every procedure they could think of and still got no results. I had to go under the knife to get a biopsy sample. No keyhole surgery there. The surgeon had to get both hands in the incision to operate the sampling tool. By far the weirdest week of my life including no sleep from Monday morning to Friday night and being as high as a kite, not to mention having both lungs collapsed as a result of the surgery.

Dean

BobL
24th Nov 2016, 08:37 PM
Sounds familiar. I went thru every procedure they could think of and still got no results. I had to go under the knife to get a biopsy sample. No keyhole surgery there. The surgeon had to get both hands in the incision to operate the sampling tool. By far the weirdest week of my life including no sleep from Monday morning to Friday night and being as high as a kite, not to mention having both lungs collapsed as a result of the surgery.

Yeah the doc warned me that collapsed lungs was a risk, as was change of internal bleeding which would probably have meant opening me right up.

Anyway, after the op I was impressed at how relatively painless the keyhole thing was.

The first bronchoscopy left me with a thick lower lip, sore throat, and spitting blood for a couple days, because they did penetrate the lung wall.

The second one was much better, no blood, a bit of a cough and sore throat and squeaky voice for a week or so afterwards. I went into hospital at 9am - into theatre at noon and was back in the ward and awake by 2:30 pm. At about 5pm they got me slow walking about doing a couple of laps of the ward and after that the nurse suggested I do a couple of laps every hour to wear off the aesthetic. They had me on a pain stop machine but that meant calling the nurse every time I wanted to do some laps so I got them to disconnect me and took a few pills instead.

By midnight I had done about 40 laps of the ward mainly becauseI couldn't sleep as the other patient in the ward (poor bugger) was snoring and rasping and his Sleep Apnea machine was kicking in and making a racket every couple of minutes. Every couple of hours a nurse was getting him to cough up stuff and he sounded like he was going to pass out so I was going off and doing laps of the ward just to get away from the sounds. I was home by 10 am the following day and back in my shed the following day.

Oldneweng
24th Nov 2016, 09:31 PM
I had a bronchoscopy. Left me with a seriously irritated throat. After I left hospital I was in bed for 2 weeks. Had a hook screwed to the ceiling so I could lift myself with my right arm. I could not use my left arm. I had to cough as part of the recovery. When you have been sliced open and someone delving in your insides with both hands, believe me coughing is the last thing I wanted to do. The drug machine had a button for me to press when I wanted to boost the pain relief. I was meant to build it up before being required to cough. I was so high I could not understand what they wanted and what I was meant to do.

I see a specialist for lung function tests twice a year. He comes to Naracoorte and for the last few years I have been able to see him there as the equipment had gradually been made portable.

Dean