View Full Version : WTC First Responder and my first post
It's about 7:50 AM I'm sitting here in my hospital bed waiting for the chief of pulmonology to talk to me about my EBUS this morning and reading posts. I can honestly say I was less afraid taking guns from bad guys as an NYPD Detective then I am of reading these posts, but I can't stop myself. I don't have the heart to give you my full story now waiting here for this damn test, but I will when I can start wraping my mind around this curse. Short synopsis for now is that I had a PET/CT about two weeks ago and my kidneys and lungs lit up like a Christmas tree, my pulmonologist Dr. Caruso who I can honestly say I now love, pulled this amazing diagnose out of his magic hat and said that he had never seen cancer in both kidneys and he really believed that it was wegs or goodpasture, because he had a case 25 years ago, so he did a blood test, not to sure what it was I think ANCA, and it tested 100 percent. Meanwhile I continued with my needle biopsy of the kidney nodules waited another week not really believing it was a rare disease but more like stage 4. The results on the needle biopsy were again Wegs, what a call Doc, I love you man. In the meantime while waiting for all these tests time is passing and I am having really bad pains in all my joints, my neck, fatigue, and kidney pains. I'm making this longer then I thought I would because I'm still waiting for my test ( I hate hospitals) by the time I got into his office on Wedsnesday it felt like someone was stabbing me in the chest and ripping the knife down into my left kidney. The official report was not written out yet so Dr. Caruso called the pathologist and confirmed it over the phone, and would not let me go home and admitted me. So here I sit for five days on 80 mg of steroids feeling so much better waiting for this EBUS because all these so called specialist have never seen wegs light up on a PET scan, and since the pet was done about three weeks ago, a large mass has grown around the lymph node in my lungs, and they want to be 101 percent sure it's not cancer also, can never be too sure! I've been a cop a long time, I apologize if I'm a little cynical. I was told I will only be the second person certified with Wegeners Granulomatosis as a 911 disease, and I truly believe that, and I think anyone else would too if you saw the stuff I was breathing down there for 12-18 hrs a day for weeks on end, with only a BS paper mask, after having no mask the first few days. I am also seeking a favor I would really love to talk to the other person that was certified, if by chance they are on this forum, and anyone knows of them. I am in New York, and again I really apologize for the long rant, I guess I don't have to go into the full story anymore, since I basically told it.
Thanks for reading
Age
Glad your docs suspected and caught Wegs in time. As you probably know by now, it's a rare disease (one in 30000 or so) and who knows what triggers it? We'll never know if it was conditions at the WTC or not. Presumably epidemiologists are poring over data and will learn something in time. So, be proud of your service - thank you - and look forward. The prednisone will make you feel like superman at first, the other meds will kick in to bring you into remission, and then you will slowly overcome the side effects of prednisone. So, be kind to yourself - give the body plenty of time and rest and see your docs regularly. The vasculitis foundation is a good resource (Vasculitis Foundation (http://www.vasculitisfoundation.org)) and NYC has some of the best Wegs docs.
Good luck, and stay in touch - we welcome rants and all.
Hello Age!!
Welcome to the "club". It sounds like you have a perceptive doc. Hope he takes good care of you!
As Max said, there are some world class wegs doc's in New York - if you need them. I echo what Max said about taking good care of yourself.
Thank you for your service at a time of grave crisis.
Dirty Don
10-21-2015, 04:06 AM
Welcome Age...first of all, I salute your service, then & now. Tough days for cops, then again cops are tough, right! So, that brings us to now...certainly you have WG & a very smart doc! You'll learn to at least 'like' hospitals, especially if they save you as they did me. My lungs looked like broken crystal with little dark spots in about half a dozen places when I went in finally...had to be taken to ER...don't remember much until 10 days later in ICU...but, after the same pred doses for at least 17 days, my lungs cleared up, seemingly on their own. Never had any other organ affectations, but sinuses are hamburger now. 4 years later I am off drugs, in a remission (have graduated to the 40% who are likely to relapse within 2 years...better odds I guess!), with paranoid tendencies about infection!! LOL...not funny, but you'll learn to laugh a bit at this stupid disease as you progress...at the very least it's irritating, at worst it's a killer. Ranting is good, but keep the BP under control! It's a stage as you'll learn...this disease will take you for a ride. So, follow your doc's protocols, be as patient as one can be, don't worry that others don't get your new normal...and stay the course...keep in touch with many on here as there is a lot of understanding, experience, and caring on this blog...it's the best. And, my best to you. Here's some spoons...yes, you'll learn about the 'spoon theory' soon enuff!!!
Thank you all for responding, I feel better already just to know I can talk to people that get it, by the way they cancelled my endobronchial ultrasound because there is only one attendant in the hospital that can perform the procedure and after days of waiting they figured out it wasn't possible because of scheduling. So one more week to wait and back as an outpatient. Tick Tock Tick Tock .
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annekat
10-21-2015, 07:38 AM
Welcome to the forum, Age, and thank you from the bottom of my heart for your service at the WTC site and everywhere else you have put your life and health on the line. I make pottery and have been exposed to silica dust over the years. That is a ridiculously lightweight activity compared to what you did for all those long days for weeks on end. Yet it is possible that it contributed to my getting WG. I will never know, as there are so many other possible triggers, and I was probably genetically predisposed to getting it. In your case, though we would usually say it couldn't be proven for sure that that was what caused it, it certainly sounds like a good bet... Either way, it is great you found us here on the forum, and I hope it will put your mind at ease to know that for most of us, once WG is gotten under control, it becomes quite manageable with adequate monitoring, and we go on to resume our former activities and live a fairly normal life. There is even a woman on here who has climbed Mt. Everest and run the Iditarod sled dog race in Alaska after a WG diagnosis. Not that most of us would ever dream of doing those things, but it is possible, and there are other examples. Right now you are in the hospital in the throes of recent diagnosis and beginning of treatment, and we all remember that. It sounds like you have great docs, and before long, we'll be hearing about how much better you feel. I wish we could help you with the name of the other person certified with WG as a 911 disease. It doesn't ring a bell, but it would sure be great if there was a way to find out. Meeting another person with WG is a profound experience, and especially if you have both been through that whole 911 aftermath, which none of the rest of us can even begin to imagine. Please keep us posted on your progress and use us as a sounding board for any of your emotions or frustrations in regard to all of this. That's one of the things we are here for.
Thank you all for responding, I feel better already just to know I can talk to people that get it, by the way they cancelled my endobronchial ultrasound because there is only one attendant in the hospital that can perform the procedure and after days of waiting they figured out it wasn't possible because of scheduling. So one more week to wait and back as an outpatient. Tick Tock Tick Tock .
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I know you trust your doc who diagnosed you and that's great. But make sure to see a Wegs specialist asap and/or get your doc to coordinate with him/her. Dr Robert Spiera in NYC is an expert, a really good person, and works with other docs (I speak from first-hand experience).
What's the bronchial ultrasound for ... does the pulmonologist suspect additional complications or it's just what he always does, poking inside lungs?
Birdie
10-21-2015, 11:02 AM
five days on 80 mg of steroids feeling so much better
While the Wegener's diagnosis sucks it's not nearly as bad as it could have been. Sorry that's the best encouragement I can offer. At least you found the best place to find answers for everyday questions.
I'm going to tell you what I wish someone had told me when at the point you're at.
1) Don't be too disappointed, prednisone is a roller coaster ride. 80 mg of prednisone makes you feel great but it doesn't last. You need it now but they'll taper off the prednisone as soon as the high dose has done it's job. It makes your mind race as long as you're on it at high dose but your body wears down, so beware there is a crash coming. Fatigue will replace the euphoric feeling of wellness and the positive physical effect wears off in a few weeks.
2) The high metabolism due to prednisone will have you eating like crazy and your body burns that extra food due to the higher metabolism. Most people still gain a lot of weight. Some weight gain is OK. Just watch it, don't let it get to be too much because it's very hard to lose later. I weight myself everyday and decide what to eat based on the trend.
3) Wegener's is very survivable. Uh, huh, nobody told me that. I didn't really know until I found this forum more than three years later. No doctor can provide what you can get right here... any more than this place can provide what a doctor does. Both have value.
Hope that's all of value to you, feel free to continue ranting at any time.
Gary
Birdie
10-21-2015, 01:30 PM
So one more week to wait and back as an outpatient. Tick Tock Tick Tock
You can relax a bit on the Tick Tock thing. You've been diagnosed and started treatment. That is usually enough to stop more damage and allow repair of existing damage. My lung involvement was almost gone in a couple months, no sign of it in six months. Vascular and a whole bunch of soft tissue damage was healed much faster than that.
You mentioned 80 mg of prednisone, have they started anything else for Wegeners treatment? Cytoxin (Cyclophosphamide) is one of the most common, paired with the prednisone. It's very effective short term but must be switched to another option for long term treatment.
Don, the EBUS is a specialized bronchoscopy instrument used to go down your trachea look around with a chip that has an ultrasound on the end of it, looks around your lung like a little worm squirming around, finds its tender morsel, snips a piece of lung, brings it up to the pathologist who does a quick cancer check on it, then this particular doctor with absolutely no personality, who is probably also a genius, and has also the talent to put an extension on it and go even deeper into the lung looking for even deeper nodules. Apparently I also have a very large lymph node in my lung that according to the highly professional physician with the bland look on his face stated to me "was highly suspect" for not being wegs, and could also be something else as well. I will also need that extension because he saw a deeper nodule that he wants to possibly snip. He is the only Doctor in this pretty prestigious hospital on Long Island that can perform this procedure, I waited four days in the hospital for this biopsy on meds to be bumped, and come back as an outpatient next week. That explains my Tick Tock comment.
Birdie, I explained my tick tock comment to Don, and you can see why I made it. It was a very stressful day which I know is bad for us, I was up and ready to go with this test at 4:30 am, and I needed to know everything already, only to be told to sit on it for another week waiting, and not starting my second Med whatever that may be, because if I also have cancer it would be a whole different approach to my medication plan.
Birdie
10-21-2015, 04:58 PM
Birdie, I explained my tick tock comment to Don, and you can see why I made it. It was a very stressful day which I know is bad for us, I was up and ready to go with this test at 4:30 am, and I needed to know everything already, only to be told to sit on it for another week waiting, and not starting my second Med whatever that may be, because if I also have cancer it would be a whole different approach to my medication plan.
Cool, you've got the situation well understood and your tick tock thingy is not just fear. Also sounds like your doctors have it under control. You're very fortunate since that's not always the case.
I think I've had two of the procedures you described but my doctors were not approachable enough to get a good explanation from them. All I was able to get was
"It's not cancer"... then a good shot of their backsides as they went out the hospital room door. I have since learned to force communication, or at least try.
Dirty Don
10-21-2015, 05:18 PM
LOL, I didn't get the benefit of that tool for my lungs...I was out so they just cut a slice of pie from my lungs that looked suspicious on the CT...they were right, Mayo verified. I did get to see the entire inside of my sinuses tho...in color no less! Such a fun disease. Keep it arm's length if possible, take it seriously, but do NOT let it run/ruin your progress...ever. Best to you.
mishb
10-21-2015, 08:35 PM
Hi Age and welcome.
All of that dust could most certainly be a cause of your WG. Gosh that sucks. I hope you find the other person.
All the guys above have given you the information that helps, I'm just thought I would pop by and say HI :biggrin1:
I hope you are back home very soon.
Alysia
10-22-2015, 12:40 AM
Welcome to the Forum. You are lucky to have a good doc and to catch the beast fast enough.
9/11 sounds familiar... If I will remember where I read it I will add the link. Meantime I found this, some things to think about:
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/1358-agent-orange-wegener-s-granulomatosis.html
Hey DD, when you say they were right do you mean that you were also confirmed with cancer? and if so, does that change everything as far as meds are concerned?
Dirty Don
10-23-2015, 11:03 AM
No cancer; many thoughts on TB, cancer, etc. The slice was a sample of the WG in my lungs...it is the most certain way to dx GPA. Other ways are used (sinus, gums, etc.) if possible, but lungs are the surest way. Yes, cancer does affect the WG treatment; altho the drugs are of similar varieties they are much more potent for cancers. I'm sure there are others on here with both involvements to help with more specific info.
Welcome to the forum! This is an interesting thread. What do the doctors mean when they say it is a certified 911 disease?
Lots of money and time has been spent trying to find the cause of gpa and I have been led to believe it was a genetic predisposition. Dr. Kathy Siminovitch at Mt Sinai in Toronto did the research. The first time I saw anything published about it was in a letter (https://secure.e2rm.com/registrant/tribute.aspx?eventid=109949&langpref=en-CA&Referrer=https%3a%2f%2fwww.google.com%2f) written by Dr. Siminovitch. The quote in the letter that we had all been waiting for was "we have pinpointed the precise genetic change which makes people susceptible to the disease – a world-first discovery in GPA." That quote was huge for us and we got kind of excited about it.
Given that, have your doctors found anything specific that ties GPA to some compound that was released into the environment at the WTC's? I guess the next question would be, if they have tied GPA to environmental factors at the WTC's and that hundreds (thousands?) of people were exposed to the same environmental factors, then is there a higher incidence of GPA in the "WTC population" than there is in the normal population. If GPA is associated with something specific at the WTC's, then you would expect a higher incidence of the disease -- anyway, that's how they isolated specific diseases associated with agent orange among the Vietnam vets. This could really be a big deal if they have found some external factor that is linked to GPA.
Along those same lines, none of us can say with 100% certainty that we have GPA. GPA is diagnosed by exclusion. That is, you discount all those similar diseases, such as rheumatoid arthritis which has a specific physical marker, and when you discount enough of them, then you assume its wegener's.
There isn't any specific marker where we can say without question that we have GPA. As far as I know, the only thing that suggests I have GPA is the presence of granulomas in my lungs, sinuses, and pituitary. And, of course, a whole host of GPA-like symptoms. However, my C-reactive and ANCA have always been normal. But that's one of the difficult things about GPA -- you just can't tell for sure that you have it. Fortunately, the treatment for many of AI diseases is pretty much the same; immune suppression and steroids.
Very cool if your doctors have found some association with 911 and GPA, though. Could you ask them what they think specifically ties the disease to 911? They might be on to something if they have isolated it to a specific compound.
Hello vdub,
I will clear up that statement, and I apologize for the mixup, throughout this two month process that slowly evolved into this thing that's going to completely scramble my life, I wasn't really ready for the dramatic change, a few months ago my wife and i were in AC at the Trop, having dinner at the Palm and having a blast, a few weeks before that I was in Oriskany NY for a few days of training, afterwards I played the Friday night no limit hold em tourny at the Turning Stone Resort Casino and took second place, man was I flying high after that, driving back to the hotel. And in two weeks I'm booked for Vegas with a couple of good friends for the Big Smoke at the Mirage. Ok a little self pitty and back to 9/11, I registered with the WTC health program 10 yrs ago since there inception because I knew I was breathing a lot of bad **** down there , and I have been going for an annual checkup since, I think I initially signed up because it was a free check-up. How else can you Think. I owe everything to them, anytime I needed a referral for a new condition they were there, and I have been certified with several, last year when I was diagnosed with Melanoma because of a WTC referral I was really starting to love these people, because if it was up to me I would of let that mole go forever. The long process leading up to the diagnose of GPA from ANCA as well as a positive reading from a needle biopsy in my kidney was peppered with numerous CT's, MRI's, blood work, and a PET/CT all led by the WTC program. So when my WTC doctor called me after the findings and stated to me "don't worry I'm going to certify you, there is one other GPA certified person" this is what I meant about certified 9/11 disease. Ultimately WTC sends it to the government and they do the certification. I do not have that as of yet, it takes a couple of weeks. I can not talk specifically of the ties between 911 and GPA but I can tell you I read an article about a very high percentage of AI diseases among WTC responders.
Is a positive kidney biopsy considered positive proof of having Wegs (GPA)? Especially when along with high ANCA scores?
Is a positive kidney biopsy considered positive proof of having Wegs (GPA)? Especially when along with high ANCA scores?
I'm certainly not a doctor, but I wouldn't think so. I guess you mean a positive biopsy as showing the presence of a granuloma? I have granuloma's in several organs, but my rheumy has always told me that wegs was only his best guess. I suppose the more gpa symptoms you can gather together, the more apt you are to a conclusive dx, but, until markers are found, I don't know that it's ever 100%. It would be an excellent question for someone to ask at their next apt.
Age,
don't worry I'm going to certify you
Certified for what? I guess I still don't get it. Is it like a service connected disability for vets that qualifies them for VA benefits?
On edit --- I've been doing some research on this. Below is an interesting article on the subject. It looks as if auto-immune diseases and wtc exposure is still very much in the air.
http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/50548
Age, was your exposure acute or chronic (defined in the article)? How many days?
The diagnosis reads as follows: right renal mass 2 cm, CT guided FNCB: negative for malignant cells. Necrotizing granulomatous inflammation with neutrophilic aggregates, suggestive of Wegener's granulamatosis. I apologize I'm reading the blood now, tested twice within 15 days ANCA was neg both times, the anti-proteinase 3 tested positive both times, first time and 100 and the second in the hospital at 168.
suggestive of Wegener's granulamatosis
"suggestive" :-) Yeah, that's sounds about right. No specific markers. I don't think they ever nail it down explicitly. I wish they could find some markers. Granulomas are a pretty good tell, but certainly not conclusive. I believe sarcoidosis also has granulomas.
When I had my adrenal crisis, the report read "adrenal crisis suggestive of Addisons has not been ruled out". <snicker> I guess it must be a legal thing...
But at least you are getting the treatment. Most AI's are treated pretty much the same.
But anyway, back to the original question.... I guess your docs didn't find anything specific to connect the conditions at the wtc with wegeners? That's kind of a bummer. Most of us are always wondering "how did we get this"? Maybe someday we'll find out.....
You know I loved reading MAD magazine as a kid, anyway I am defined as chronic according to that article you sent me. I was down at the site about 6 hrs. after the second tower went down and I stayed the better part of the next three weeks at ground zero. Afterwards I was in a specialized unit doing identification on property ( I won't go into the name of the unit, i was in it prior to 9/11 and it was elite, I am not sure if you can be private within the forum, but I will let you know if you really want, I had very close facial contact with this property) assigned 12-24 hrs a week for 12 months at the Fresh Kills landfill doing identification, and eating on site in a large makeshift lunch tent very delicious, the landfill is where they brought all the debris from ground zero, we had to put it somewhere can't leave it laying around downtown Manhattan, pretty big crime scene don't you think? Yes certified is the first step to a service connected disability, which will be a long road. But more then that its the City covering my ass, the same way I ran to save lives for the city and the people of New York.
let me clarify I meant Acute exposure.
annekat
10-26-2015, 02:14 PM
It's my understanding that we are said to be genetically pre-disposed to getting GPA or other autoimmune diseases, but that there are positively identified triggers, such as environmental dusts and infections, and that those pre-disposed people, when exposed to these triggers, would be the most likely to get an AI disease. Why one person at the WTC site would get GPA and another would get a different AI disease seems a mystery. It would stand to reason that a certain number of those working at the WTC site from the beginning, and for weeks, with inadequate respiratory protection, would be likely to get some sort of health condition or other from what they were exposed to. And also that there'd be a higher incidence of these conditions among any of the population living or working near there. Being genetically pre-disposed would just make it more likely. And we can't forget the stress of working under those conditions and seeing the things you must have seen. It's been said many times on here that stress is a factor in flares, and I would think, in getting GPA in the first place. Especially among those genetically pre-disposed, if that is indeed the bottom line.
I am not sure if you can be private within the forum
Nothing on the forum is private and once its posted, it is there for a very long time. Even if you edit and delete, odds are good that the original message was already sent to people who subscribe to the thread. And, then, of course, don't forget google and all the other search engines. They grab stuff on the internet with amazing speed and you can always look at the cached sessions of most all internet pages. The internet is a wonderful invention, but very dangerous. You have to be very careful what you say. Social media, aka facebook, is particularly bad because it lulls you into a sense of security and you can be easily caught off-guard and put too much info out. I'll never have a facebook account. (sorry facebook fans)
We do have private one-to-one e-mail, but really anything on the internet isn't 100% private. I rarely use my real name, even on this forum. Even my location is kept private although the coordinates will get you close. Only a few close friends on the forum have my real name and my real e-mail.
I'm glad the city is taking care of you guys. I'm guessing there is a fair amount of PTSD, too. I can imagine it was like walking into a war zone -- actually, it was war zone IMHO.
I read your story, very horrible and scary. It's brave how you can write like that, listing the facts, but I could imagine the pain behind it, I cant do it yet, I'm mad at the curse, it's so new to me, maybe I'm still in shock about my new life. Regardless where it came from we all share this at certain degrees and stages, yours obviously more severe then mine, but I think where will I be in five years from now, will the Melanoma come back and effect the GPA? and will this EBUS procedure on Tuesday find cancer in the lymph node in my lung? as the Doctor "suspects" I'm a Detective and think in terms of motive, cause, and result along with a lot of cynicism and doubt in between. The result is what scares me, I wish this was one of my cases, I investigate it, come up with the bad guy, arrest him, hand it over to the prosecutors to there job and move on.
I totally understand about what your saying in regards to privacy and the internet, I have been using it for many years to find people along with other governmental programs and tools I use in cases. I get it, that's why I didn't mention my unit. But a good Detective can probably put it all together from my statements.
I'm mad at the curse, it's so new to me
The best advice I can give you and I think you'll get the same advice from most anyone on the forum is to not let this disease rule your life. Be vigilant about treating it, but, otherwise, try to do everything you normally would. We have lost a number of good people who were members of the forum, but they all gave it the good fight and lived life to its fullest. We have a map of forum members (see the url below in my sig line) and all the candles you see are members who have passed. I don't know how many candles we have -- too many, tho.
My wife and I have tried to do everything we normally would have done for a couple of old retired people. Normally, we take our RV south for the winter and roam around to all the nat'l parks/monuments and museums. We have a lot of fun doing that, but it is a challenge to get blood tests and drugs while on the road. It took a while to figure out how to do it.
Last year we decided to go international, which meant I had to take all my drugs with me and also be able to go across borders with the drugs. That, actually, didn't turn out to be much of a problem. We went to the UK twice, also to Ireland and France, then to Alaska, and, finally, a cruise to Tahiti. Disease wise, Tahiti was the most interesting situation (see posts 8 and 10 (http://www.wegeners-granulomatosis.com/forum/medication/4813-maintenance-medications.html)). But, we haven't let anything hold us back. Many of us on the forum do international travel.
MikeG-2012
10-28-2015, 04:20 AM
The best advice I can give you and I think you'll get the same advice from most anyone on the forum is to not let this disease rule your life. Be vigilant about treating it, but, otherwise, try to do everything you normally would.
Well said my friend. I have my job, and that is about the best thing for me. It keeps me going, gives me sense of purpose, something to do and also provides INSURANCE.
Pugdog
11-13-2015, 12:54 PM
Not an EMS , I was diagnosed while in college. During that time I had part time job landscaping, Dr told me I may have contracted WG from inhaling the mulch. Your symptoms sound so much like mine originally.
Dr told me I may have contracted WG from inhaling the mulch.
I'm certainly not a doctor, but i wouldn't think that inhaling mulch would do much to cause or even trigger gpa. I grew up in northern Idaho where timber was one of the top industries. Between sawing trees down, delimbing them, debarking them, sawing them into lumber, planing them to size, etc, etc, there's a lot of bark (mulch) flying around and I don't think I've ever heard of anyone getting gpa. We also have (had) a mulch making plant in town and I didn't hear of any adverse effects from it. I don't recall the guys even wore masks.
I think most research is leaning toward a person having a predisposition for the disease and then something triggering an onset of the disease. I have heard that mental or physical stress, viral infections, or compromised immune systems might be triggers to put the disease on course, but I haven't seen any research that it might be caused by some external irritant along the lines of say something like black lung disease being caused by coal dust or lung cancer be caused by smoking.
Several veterans tried to tie wegs to agent orange, but I think the VA nix'ed that idea. The VA does maintain a list of presumptive diseases if you were exposed to agent orange. The list is at the url below. No AI diseases are on the list.
Veterans' Diseases Associated with Agent Orange - Public Health (http://www.publichealth.va.gov/exposures/agentorange/conditions/)
annekat
11-14-2015, 04:09 AM
I have heard since joining the forum in 2011 that silica dust, in raw form or fired, as in clay or glass making, has been thought to be a trigger for the onset of Wegs, even if only in those you describe as having a genetic predisposition. I make pottery, but there is no way of knowing whether the silica dust I've been exposed to was the trigger, though it could be. I remember people on here describing getting it after working in a glass bottle factory, and others who've mentioned certain areas in Wales, Canada, or elsewhere, where there were pockets of GPA cases within a small population and some kind of mining or chemical use was nearby. We'd have to search the archives to find these old posts. I also believe it can be triggered by infections in susceptible people, and a lingering cold could have been the trigger for me, followed by inhaling very strong incense at a funeral. Back to silica dust, I would think there'd be a LOT of it at the site of the destroyed WTC, along with many other nasty things that one shouldn't inhale.
mishb
11-14-2015, 09:48 PM
I know that when we purchase bags of mulch or fertilizer or potting mix/soil, it has a warning on the bag, that if you have an auto immune condition, then you should wear a mask and gloves when handling.
I chose to let my husband use it whilst I stand and watch :wink1:
mishb
11-14-2015, 09:52 PM
I also believe it can be triggered by infections in susceptible people, and a lingering cold could have been the trigger for me, followed by inhaling very strong incense at a funeral.
Very interesting that you mention this because I know that exact day I became ill with WG.
It was the night of my fathers funeral :crying:
I did have the joint pains for a couple of years before this and was eventually diagnosed with RA, but the sinus infections from hell, started the night of my fathers funeral, which did have very strong incense at the church. I guess that was also the last day I could smell.
I know that when we purchase bags of mulch or fertilizer or potting mix/soil, it has a warning on the bag, that if you have an auto immune condition, then you should wear a mask and gloves when handling
That is super interesting! It really specifies "if you have an auto immune condition", you should wear all that gear? That would mean to me they have found a direct connection of some sort. I'd love to see the study they are basing that on. Is it a specific brand of mulch that is acting voluntarily out of an abundance of caution or is it a law and the warning is on all mulch? Very interesting that they would specifically call-out AI diseases....
Very interesting that you mention this because I know that exact day I became ill with WG.
Mine dx was a loooong drawn out 2 years. I was treated for sinus infection 3 times during the last few months. I don't think they would have found the problem for several more months had I not had the terrible headaches and they decided to do an MRI on my head. That's when they found the granulomas in my brain with surgery to follow.
annekat
11-15-2015, 03:22 AM
That is super interesting! It really specifies "if you have an auto immune condition", you should wear all that gear? That would mean to me they have found a direct connection of some sort. I'd love to see the study they are basing that on. Is it a specific brand of mulch that is acting voluntarily out of an abundance of caution or is it a law and the warning is on all mulch? Very interesting that they would specifically call-out AI diseases....
I think even if they didn't have hard scientific evidence, they'd probably heard things about AI diseases connected to inhaling things, and were at least "covering their butts" in case someone got sick, but it seems they should really say it about everyone. I see a lot of warnings, especially on cleaning products about people not inhaling fumes or powders, and it is precautionary, and people probably aren't always that careful and don't get sick. But they can. My boxes of clay warn that clay in the wet state is harmless but dry clay dust, raw or fired, must be protected against. They are probably thinking more about silicosis, which is not an AI disease. I don't hear of many potters getting it, only one famous one, that I remember.
Asbestos has also been mentioned as possible causal factor:
http://www.medscape.com/viewarticle/542480
Here are some quotes from one study:
Conclusion: These preliminary findings support the hypothesis that asbestos exposure is associated with autoimmune disease. Refined measurements of asbestos exposure and SAID status among this cohort will help to further clarify the relationship between these variables.
An association between occupational exposures of inhaled particulates and autoimmunity was postulated as early as 1914, when Bramwell (1914) reported increased frequency of diffuse scleroderma (SSc) in stone masons. Although genetic factors undoubtedly exist that affect the development of systemic autoimmune diseases (SAIDs) in certain individuals, the concordance of SAIDs among identical twins is only 25–40%, suggesting that environmental factors play a substantial role (Powell et al. 1999). Indeed, several environmental agents are implicated in triggering or accelerating SAIDs, including mercury, iodine, vinyl chloride, certain pharmaceuticals, and crystalline silica. However, much more research is needed to determine the mechanisms and epidemiology linking exposures to development of SAIDs. There is considerable epidemiologic evidence supporting the hypothesis that occupational silica exposure is associated with a variety of SAIDs, including SSc, rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), glomerulonephritis, and small vessel vasculitis (Koeger et al. 1995; Parks et al. 1999, 2002; Powell et al. 1999; Steenland and Goldsmith 1995). Research regarding asbestos exposure and SAIDs has been much more limited.
The small vessel vasculitis would be us.
This study in Libby Montana is referenced many times in journals: This quote might pertain to warning on mulch.:
Health effects have been detected not just in mine and processing plant workers, area lumber mill workers and loggers (from asbestos dusting of forests) and their families, but also among other Libby residents and their children. Many were exposed through ambient air or to mine tailings and other contaminated materials provided to the town by mining companies for the construction of ball fields, school running tracks, playgrounds, public buildings and facilities, as well as for private gardens and house and business insulation.
It looks like both studies talk about mine tailings and silica. The Libby, MT study references lumber mills, but, as I interpret it, suggests that the lumber people were exposed to silicate from the local mining industry and asbestos dusting of the road and not from by products of lumber production. Silica is pretty bad news for the human body.
I don't hear of many potters getting it, only one famous one, that I remember.
I only know of two famous potters; Annekat and Harry Potter. I haven't heard of Harry getting wegs.... :-)
spiritscript
01-06-2016, 06:24 PM
Yes! The new young lady (Deb, I think?) inhaled silica and got WG from it!
I have heard since joining the forum in 2011 that silica dust, in raw form or fired, as in clay or glass making, has been thought to be a trigger for the onset of Wegs, even if only in those you describe as having a genetic predisposition. I make pottery, but there is no way of knowing whether the silica dust I've been exposed to was the trigger, though it could be. I remember people on here describing getting it after working in a glass bottle factory, and others who've mentioned certain areas in Wales, Canada, or elsewhere, where there were pockets of GPA cases within a small population and some kind of mining or chemical use was nearby. We'd have to search the archives to find these old posts. I also believe it can be triggered by infections in susceptible people, and a lingering cold could have been the trigger for me, followed by inhaling very strong incense at a funeral. Back to silica dust, I would think there'd be a LOT of it at the site of the destroyed WTC, along with many other nasty things that one shouldn't inhale.
annekat
01-06-2016, 06:46 PM
Yes! The new young lady (Deb, I think?) inhaled silica and got WG from it! I make pottery, so I have inhaled some silica dust. There is no way of knowing whether this is why I have Wegs. It is possible, as are other things. We all inhale silica just walking down the street or along a wooded path, or in the desert. It is everywhere. It is a matter of degree. I don't know if we know for sure that Deb has a WG diagnosis. But she did indeed inhale SOMETHING, a lot of it, that was for killing bedbugs, and it may have had a lot of silica in it. If it was diatomaceous earth, the stuff I got for cat fleas has mostly amorphous silica which is less harmful than crystalline silica. And I have barely used it. We really don't know what Deb inhaled. But inhaling too much of anything is bad, and an extreme situation like the WTC aftermath or having even a 'natural' bug killer in one's bedclothes and heating ducts, would certainly be suspect. It would be nice to know more about exactly what happened in each of our cases to make us end up having WG.
debra
01-06-2016, 08:44 PM
Oh, how did I not see the add on posts here! I have articles on the silica, Wg connection. I know for afact, yes a fact this is what triggered me. And yes it is wegeners, weather or not, I actually get it written in stone. This was to prevent bedbugs, not kill em. This was the wrong stuff too, as its used to deworm cows! Cows, are pretty big animals! It's pure dust! Stupid, stupid woman.... Fear got me real good...II have this still in coffee cans, thinking I could give it to some lab, to try proving the connection. Ya right, I can't even get a doctor to look past antibodies... Very expensive mistake, huh? Deb.
debra
01-06-2016, 08:47 PM
So sorry for the typos! It is me, after all....... Deb.
MikeG-2012
01-07-2016, 01:16 AM
It looks like both studies talk about mine tailings and silica. The Libby, MT study references lumber mills, but, as I interpret it, suggests that the lumber people were exposed to silicate from the local mining industry and asbestos dusting of the road and not from by products of lumber production. Silica is pretty bad news for the human body.
I guess I too have a minor connection with silica. We had a pool for over 10 years when I was growing up, and I was always in charge of filling/changing the pool filter with silica sand. I also used to dump the old sand in the horseshoe pits, where were would walk on it barefoot playing horseshoes on a regular basis (pretty much all weekend, all summer).
Interesting...
annekat
01-07-2016, 06:12 AM
I guess I too have a minor connection with silica. We had a pool for over 10 years when I was growing up, and I was always in charge of filling/changing the pool filter with silica sand. I also used to dump the old sand in the horseshoe pits, where were would walk on it barefoot playing horseshoes on a regular basis (pretty much all weekend, all summer).
Interesting... Yes, interesting. I'd think the size of the grains of sand would make some difference as to the inhalability. But there'd no doubt be some dust from stirring it up much or dumping it into horseshoe pits. I'm going to try to get a better dust mask this year, one that won't fog up my glasses. Bandanas are probably not good enough protection. People who go to the beach a lot should also keep in mind, sand is made up mostly of silica, as far as I know! But don't let that stop you from going; I don't think you'll be breathing clouds of dust from it unless it is very windy and the sand is pretty fine and dry.
annekat
01-07-2016, 06:17 AM
Oh, Deb, I snuck that on late last night. Getting too caught up when I should be doing other things. But I think it's good you saved that stuff and hope you can get it analyzed some day. And I'm not saying you don't have WG. You probably do. I just would like to see a little faster co-operation from the medical community there in getting it pinned down and getting you treated.
debra
01-07-2016, 06:22 AM
Anne, because the sand at the beach is more crystallized, I was thinking this to be different, not sure. It only makes sense that anything inhaled for an extended period would be suspect. My stuff is i think different from youres Anne, as mine was/ is very fine. Like powder. There's a woman down stairs that uses this, only hers being the correct stuff! Hers is like rock salt. Nothing to breath in. It's not sold anywhere except on line. I wish I never met this woman! Had I not, I wouldn't know about this stuff. Interesting stuff, nevertheless..... Deb.
debra
01-07-2016, 06:30 AM
Hi Anne! Anne, something has got to give, ya know? I understand the caution, and reluctance, to treat, while no real biopsy/ antibodies. I'm trying to see things from their veiw, and have more compation, because this helps me to not blow a gasket... I'm not very patient. God knows I'm learning. It's like this disease has a brain! He is very sneaky. Has his own personality. I hate him, Anne...... Me! Xo Xo Xo
annekat
01-07-2016, 06:40 AM
Anne, because the sand at the beach is more crystallized, I was thinking this to be different, not sure. It only makes sense that anything inhaled for an extended period would be suspect. My stuff is i think different from youres Anne, as mine was/ is very fine. Like powder. There's a woman down stairs that uses this, only hers being the correct stuff! Hers is like rock salt. Nothing to breath in. It's not sold anywhere except on line. I wish I never met this woman! Had I not, I wouldn't know about this stuff. Interesting stuff, nevertheless..... Deb. No, my stuff is very fine, like powder. Not at all like rock salt. It says it contains amorphous silica, which is not as dangerous as crystalline silica, which is probably what is in pottery. I am not a scientist and cannot explain the differences. We just shouldn't breathe a lot of any fine dust-like powder. It is dangerous to breathe much talc, yet people have been using it on babies for many years. I buy cornstarch body powder, but even that I am cautious of. Of course, some things are worse than others. BTW I have very rarely used that stuff on my cats and not at all since you came on here. I still would, with a proper dust mask, and cautiously and sparingly, so as not to harm the cats. I think moderation is the key.
debra
01-07-2016, 06:55 AM
Anne, so weird you mentioned talc, as I used that later, but was already sick, from the damn silica! Funny the morons that come here to teach on preventing bugs, actually recommend both! This is how i learned of the talc! Talc is also involved in causing ovarian cancer... I never used any of this garbage, till my neighbor, shirly got bedbugs in 2010. Rest in peace Shirley... So this is life....... Me. Xo
Asbestos has often been mentioned as a possible contributor to Wegs along with infections. I worked for years in a old building that had lots of asbestos everywhere. Two of us out of a staff of few hundred came down with Wegs and twice that many with MS, and twice that many with other supposedly rare diseases as well as numerous cases of various cancer. Our inside joke was we couldn't afford to retire because whenever anyone retired, it seemed they would get sick or die within a year or two and many did. We also had high levels of other pollution from a garbage burner right outside our building that burned garbage to heat the large facility. The fumes often came in through our windows and air conditioners.
debra
01-07-2016, 07:52 AM
Drz, hello! Drz, this is interesting! Drz, if I could only pick one, my gut, hoes with the garbage burning... Ingnore that hoe! I meant goes.. Drz, they had this thing on tv, back about a month or so, on the fire department men, I think from Mass., and how they all came down with cancers and rare diseases. Again I wonder how many are Wg, cases in diagnosed, un, not in! Why are some letters such an issue? Anyway, this fascinates me.... Drz, thank you for this! Deb.
Drz, hello! Drz, this is interesting! Drz, if I could only pick one, my gut, hoes with the garbage burning... Ingnore that hoe! I meant goes.. Drz, they had this thing on tv, back about a month or so, on the fire department men, I think from Mass., and how they all came down with cancers and rare diseases. Again I wonder how many are Wg, cases in diagnosed, un, not in! Why are some letters such an issue? Anyway, this fascinates me.... Drz, thank you for this! Deb.
Fire fighters would certainly be exposed to lot smoke from burning very toxic substances plus lot of ash and these could be causal factors. And the job certainly would offer plenty of stress.
debra
01-07-2016, 03:15 PM
Drz, hi! Drz, I think it was on cronicle, news magazine show, ABC t think. I'm learning tv, is real different all over, but youtube, would probably have it. Anne, hi, Anne, I believe you're also exposed to bentonite clay. Also not good. Asbestos t would assume if the wall or whatever has been handled in some way, that causes that powder like stuff to circulate. Interesting to see what people have worked with, or around.... Deb.
annekat
01-07-2016, 04:46 PM
Drz, hi! Drz, I think it was on cronicle, news magazine show, ABC t think. I'm learning tv, is real different all over, but youtube, would probably have it. Anne, hi, Anne, I believe you're also exposed to bentonite clay. Also not good. Asbestos t would assume if the wall or whatever has been handled in some way, that causes that powder like stuff to circulate. Interesting to see what people have worked with, or around.... Deb. I believe asbestos exposure is a more serious as a public health problem overall than silica exposure, because so many buildings were built with it for so long before they knew the danger. I knew someone who died of mesothelioma, a cancer in the lungs caused directly by asbestos, which his work exposed him to on an everyday basis. My sister is in the public health field and works with asbestos removal companies, not doing that work herself, but overseeing, inspecting, etc., and knows a lot about it.
Deb, I am exposed to clay, period, it doesn't matter if it is bentonite or any other kind of clay, the two ingredients in all clay are kaolin and silica. Bentonite refers more to where it is mined, etc, and it has some properties other clays don't have of keeping glazes in suspension, and is used in very small amounts for that purpose. I think most cat litter has it, too. The clay that I make pots with probably has no bentonite in it but it doesn't matter, clay is clay, and it all contains silica. (As for kaolin, the other ingredient in clay, that is what they make Kaopectate out of.) Silica is the glass forming ingredient in clay, and all clay and glazes have it. As long as the materials are being used in the wet state, and there is no dust, there is no problem. Keeping the workspace clean, wet mopping, good filtered vacuums, room air cleaners, etc., are important in cutting down on dust. And of course wearing a mask. We all know that. A respirator is even better, and I would think imperative in really hazardous situations like asbestos removal or spending time at the WTC site.
debra
01-08-2016, 12:37 AM
Anne, hi. I always saw asbestos as being involved in lung cancer, and mesothelioma.. if I had to choose to be exposed to one, I'd pick the asbestos. Unless its being disrupted, sme how, like construction, because of the fine powder that it releases. I see silica, as being the wegeners causing factor here. Not saying all of coarse, just my opinion.. forgive my typo, up there... People will never Realy know, unless they do something as stupid as me, what they have been exposed to... I also don't believe the study's. Things are with held from the public, and that's just reality. I also don't believe its that rare, and I never will. Sorry, I'm not buying it. People are dying undiagnosed, probably quite frequently, of this. Don't want to ruffle feathers, but I believe different than most here, I guess on this whole wegeners thing. Im honest and just speak my mind. This disease deserves more attention, and I don't see this either. Maybe someday, but after how many die, never knowing why? Deb.
annekat
01-08-2016, 07:55 AM
Anne, hi. I always saw asbestos as being involved in lung cancer, and mesothelioma.. if I had to choose to be exposed to one, I'd pick the asbestos. Unless its being disrupted, sme how, like construction, because of the fine powder that it releases. I see silica, as being the wegeners causing factor here. Not saying all of coarse, just my opinion.. forgive my typo, up there... People will never Realy know, unless they do something as stupid as me, what they have been exposed to... I also don't believe the study's. Things are with held from the public, and that's just reality. I also don't believe its that rare, and I never will. Sorry, I'm not buying it. People are dying undiagnosed, probably quite frequently, of this. Don't want to ruffle feathers, but I believe different than most here, I guess on this whole wegeners thing. Im honest and just speak my mind. This disease deserves more attention, and I don't see this either. Maybe someday, but after how many die, never knowing why? Deb. Deb, I have no doubt silica and other substances can easily be a trigger for Wegs, as can infections, and that there is a genetic predisposition that makes some more likely to get it than others. That's what the most recent research points to according to what I've read on this forum and elsewhere. I did not say that asbestos was a bigger problem than silica in causing Wegs, I suggested that it has been a bigger public health problem overall, over the last 75 years or so, than silica, because if its widespread use in building and the numbers of people exposed to it without knowing the dangers, and later coming up with fatal conditions just as bad as Wegs. A coal miner who got WG from his work might disagree because he sees it personally. If you got Wegs from silica, it doesn't mean that it is the only cause or there are not worse, or just as bad, things out there affecting just as many people. But I am not minimizing the importance of silica and Wegs. As a potter, I've always heard of people getting silicosis, which is different than Wegs, but I still believe silica can trigger WG and the people who've talked about silicosis knew nothing of WG, just as the people who've talked of asbestos may also have been overlooking WG as a possible result thru lack of knowledge. I keep going back to my memory of watching The Dust Bowl on PBS and seeing accounts of many children and others dying of lung conditions due to the dust they inhaled. They just died and were buried. We don't know if they had WG, silicosis, cancer, or if their lungs were just so clogged up with dirt that they failed completely. I don't know the time frame, how fast they declined and died, whether they had WG symptoms or not, and why some were affected so much more than others. I think that many of them must have had WG or other autoimmune conditions, and even more, I think the people who survived this and made it to California or wherever, or who remained in Oklahoma, must have had a high incidence of problems later, including WG, that were never diagnosed. This is only speculation and was not addressed in the documentary. I totally agree with you that there have been many dying of undiagnosed Wegs, since we haven't even known about it that long, and that it is not as rare as they say, and that it deserves more attention. That does not ruffle feathers, because it is only repeating what has been said over and over on this forum since the day I started reading it.
annekat
01-08-2016, 09:46 AM
I should add, asbestos is not NOW the problem that it was, because it is no longer used and we know how to remove it safely. There could still be the odd house or building containing it that has been overlooked or the residents are ignorantly removing it themselves without proper procedures. I wasn't thinking of people living or working in these buildings with it being undisturbed as being the ones in danger. It was the people involved in the construction or demolition of any of these buildings, before we knew of the dangers, not to mention those working in the factories that made the asbestos panels, and there must have been a lot of them. The guy I knew who died of mesothelioma was probably in his 70's, ten years ago, so the people affected who are still alive are probably pretty few and far between nowadays. So yes, we could say that silica exposure is more of a problem NOW, and especially it's connection to WG, since people are so much less aware. The fact remains that silica is everywhere and we can't get rid of it. We can only avoid putting ourselves in situations where clouds of dust of fine particles of it are being raised and we are breathing it.
debra
01-08-2016, 10:15 AM
Anne, hi. I just wanted to say, these two paragraphs you wrote, are very good... Anne, I'm glad you post frequently, a true asset to this group... Man, I wish people posted more. This group could Realy kick, a**. Not many seem as active, and I realize people have lives, get well ect. But post on how you're life is going, now that you killed the dog, or got him quiet from barking. Post about the bedbugs you hope you never get! Post about you're love for the color blue... Anything... Surely I can't be the only one with weird things happening to my body, with this? How's everyone's tongue? Ya, not many I guess with oral involvement.... Thanks Anne! Deb, with love... XoXO
annekat
01-08-2016, 10:56 AM
Anne, hi. I just wanted to say, these two paragraphs you wrote, are very good... Anne, I'm glad you post frequently, a true asset to this group... Man, I wish people posted more. This group could Realy kick, a**. Not many seem as active, and I realize people have lives, get well ect. But post on how you're life is going, now that you killed the dog, or got him quiet from barking. Post about the bedbugs you hope you never get! Post about you're love for the color blue... Anything... Surely I can't be the only one with weird things happening to my body, with this? How's everyone's tongue? Ya, not many I guess with oral involvement.... Thanks Anne! Deb, with love... XoXO Thanks for the compliment. Yeah, people have lives. I haven't killed the dog, just quieted him down, and still need to take the meds to keep him quiet. I told you about my tongue being fine and how I like the color blue on the other thread. Going to go back and add a little about the oral stuff on that thread. Can't say a whole lot about my life right now, not that much going on, but will fill you in as things come up.
debra
01-08-2016, 11:08 AM
Anne, cool.. I'm glad you're tongue, is healthy. Real glad you dig the color blue, though you didn't specify which shade. So many shades of blue..... Me. Xo Xo
annekat
01-08-2016, 03:11 PM
Anne, cool.. I'm glad you're tongue, is healthy. Real glad you dig the color blue, though you didn't specify which shade. So many shades of blue..... Me. Xo Xo Yeah sorta thought discussions of favorite colors and stuff belonged on the other thread, and saw you'd asked me about it both places, elected to answer it over there instead of further hijack this thread. XOXO
debra
01-08-2016, 03:20 PM
Anne, sorry, didn't mean to hijack, but the tongue thing is wegeners. Oral involvement. Ok, the blue thing, just an add on... Stupid, yes. It is me after all. Deb.
annekat
01-08-2016, 03:50 PM
Anne, sorry, didn't mean to hijack, but the tongue thing is wegeners. Oral involvement. Ok, the blue thing, just an add on... Stupid, yes. It is me after all. Deb. But you asked about both those things on both threads, so I picked "your thread" to go into any detail in my answers. I was thinking about the guy who started this thread who had been a first responder at the WTC site and inhaled all kinds of crap and gotten WG, and thought maybe talking about the color blue or whatever you wanted to know about my tongue was a little trivial and off topic. Not to worry, happens all the time, nothing to feel bad about, just explaining why I made the switch to the other thread. No need to think of it as stupid.
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