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marta
11-17-2010, 06:26 AM
Hey y'all,

I've been off for a while trying to get myself together - it's not coming back to me as quickly as I like - in fact it's tiny little microsteps - the kind you need a microscope to see the progress with. But I think it's moving in the right direction.

Here's a little something that my sister just found and sent my way. Interesting indeed. I remember my little girl having the 'slapped cheek' thing a while back. I might ask my doc to do a blood test just out of curiosity.

Human Parvovirus B19 Infection: Autoimmune Disease Trigger (http://www.suite101.com/content/human-parvovirus-b19-infection-a17818)

Also something crazy I just heard about today. ANOTHER co-worker just got taken to the city with 'liver failure'. This is a strong, healthy active father of two who ended up working at my old desk after I got sick (only six months). So now there are FOUR of us who worked within 5-10 feet of each other, with no medical histories, very active lifestyles who are all currently fighting something of unknown origin (mine is the only one diagnosed, but we all seem to have similar symptoms and all of us have organ involvement). How bizzare is that?

Hope everyone's doing well. I haven't been on my computer for days and days.

julia
11-17-2010, 07:28 AM
I remember reading this when I was first diagnosed. I had worked at a daycare and one of the children had come down with fifths disease. While sick children waited for their parents to come I would keep them in my office. Sometimes they would wait up to a few hours until their parents could pick them up. they would touch everything in the office. I was not worried for myself usually just disenfected after they left.

That was one of the many things I thought of on how I could have become ill with wegeners.

I have a list of them. Who knows it may be a combination of many.

I also was exposed to strep throat and possibly had it just before I became very ill. (the doctor was out of test kits but since I had a sore/ulcer in my mouth that looked infected she gave me anti biotic and said it would cover both.) I was diagnosed with wegs less than 1 month later.

I live by lake michigan and grew up drinking water from it that was later found to be polluted with chemicals from a plant in our town.

elephant
11-17-2010, 09:19 AM
Marta that is weird! You all should go to the same specialist and do a case study.
Julia, I spent most of my life drinking lake michigan. I lived about three or four blocks from Lake Michigan.

Trudy
11-17-2010, 02:50 PM
Although I don't yet know what type of vasculitis I have, I will add that I live in northwest Indiana and also have Lake Michigan water. It does make you wonder!

Geoff
11-17-2010, 07:37 PM
Hi Marta, sorry to hear you are struggling at this moment, get some rest and hopefully stability back into your life. With reference to your comments about immune triggers, by coincidence I was at a vasculitis meeting on Sunday and a study by David Scott, who is head of research at Norwich Hospital was discussed. In simplistic terms, it was found that there was a high occurance of Wegeners in rural areas and also involving people who dealt with livestock. The discussion then inevitably moved onto environmental issues, spraying of crops, animal jabs, organic phosphates, etc and their potential impact on us. From my own point of view, I was a land surveyor for 35 years and so fitted perfectly into the demographic. Not long before I started 'becoming ill', I worked in a converted barn which had been turned into offices. Needless to say it was full of exposed beams which added to the 'charm'. One day I came into work and found the desks covered in a fine dust and was told that the beams had been treated with ??????. This dust persisted for several weeks. Looking back, I am convinced that this was the trigger to my condition. I recall Marta that in your survey you asked where we live, and it would be interesting to see if your study agrees with the research from David Scott. :unsure:

Fran
11-17-2010, 08:51 PM
Hi Geoff, I was very interested in your post as I took part in Professor Scott's study and very thorough it was too !. The Research Doctor came to the house and filled in the questionnaire which covered just about everything you can think of, from environments lived in, to childhood illnesses, pets, use of insecticides, family health traits, etc . I do have a copy of the final report (just can't lay my hands on it at the moment ~ the Wegener method of filing !!).

I do recall the findings made rural living a big contender ( most of Norfolk is very rural anyway) but there is a field with woods going up a hill at the back of my house, making a bowl-like effect and when we first moved here, the farmer regularly sprayed the field with weedkiller. !!, Not long after this my problems began.

I did read about the meeting in the Stuart Strange newsletter and would have loved to attend so am very interested in your comments - thanks.

Geoff
11-17-2010, 11:52 PM
Hi Fran, I've got Eileen to thank for giving me the 'heads up' about the meeting. Its a pity you couldnt make it as there would then have been 11 Weggies!!

Do you go to Addenbrookes or do you see Professor Scott in Norwich?

Sangye
11-18-2010, 12:23 AM
This makes me wonder how many of us have changed our own use of chemicals in the home and garden. (I already used natural cleaners and no toxic stuff before I got sick.) Has it changed any of your habits, fellow Weggies?

Fran
11-18-2010, 05:08 AM
Hi Geoff - I don't actually see Professor Scott personally (although he was one of the consultants who input into my dx in 1998) I see one of his colleagues I have been told P.Scott doesn't see many patients now as he is more into research and lecturing - but don't quote me on that !!

It's a shame I couldn't make the meeting - glad you enjoyed it.

Fran
11-18-2010, 05:17 AM
Sangye, Well all pesticides are banned at our house now (shutting the stable door after the horse has bolted !!) and we are also careful about not using aerosols as they irritate my sinuses. Going to the hairdressers is just awful as the hairspray makes me cough and sneeze - that's why I hardly go and cut my own hair - lol :ohmy:

LisaMarie
11-18-2010, 05:28 AM
hey I tested postive for parvo about 17 yrs ago when I was pregnuant with my first son...how weird..neat article...gonna passs it on to my WG doc...thanks for sharing

marta
11-18-2010, 07:01 AM
Hi Fran, I've got Eileen to thank for giving me the 'heads up' about the meeting. Its a pity you couldnt make it as there would then have been 11 Weggies!!

Wow!!!!! 10 Weggies in one spot. That sounds amazing. Talk about a rare sighting.

I've been on the cytox for just under a week now and symptoms seem to be getting slightly better, so I'm thinking this is a good trend. Thanks everyone for your kind wishes and support. I can't describe in words how it makes me feel - but it's very very good.

I also live rural, however mine is quite on the opposite side of the spectrum from what you describe. I live in a National Park environmentally protected by the government. No pesticides, no chemicals, no livestock (other than indigenous animals) as clean and pristine as you can get. I do work in a building which is a National Historic Site which just underwent a multimillion dollar revamp (to bring it to it's old splendour and ensure that it survives for generations to come). So I was thinking about the number of people who are sick working in that building. There are about two dozen people working in the building throughout the year altogether, however in my office and the one adjoining there have been 8 people working at those three desks over the last 3-4 years. Four out of the eight are currently sick with bizzare things and organ involvement. 50%!

I've also been very vigilant about chemicals in the house the last half a dozen years. I've been cleaning with microfibre cloths water and 100% organic orange oil concentrate. So things have been pretty pure around the home front.

Like I said, interesting. The porvovirus thing too, I remember getting completely knocked off my feet (literally) at the end of last summer when Hana was sick with it. Then I got my first symptoms from Wegs this last January.

Some sleuthing to be done once I get this flare under wraps. I like a challenge.

Speaking of Hana and getting sick with kid diseases. I had to keep her out of nursery school today because she's healthy. How's that for irony? Parents are bringing their hacky, snotty kids in, and I have to keep my healthy kid away to avoid her bringing any of that stuff home. Yeah, cyclophosphamide.

elephant
11-18-2010, 07:16 AM
Glad you feeling better Marta! Your smart to keep your daughter home. That is weird about the people who worked in the same area....wonder if there is something in duct system...who knows. Maybe bad dry wall that they put up, or carpet???

pberggren1
11-18-2010, 08:30 AM
My cleaning habits have not changed at all really. But the orange oil stuff that Marta uses sounds interesting. I use the Clorox wipes to clean the bathroom and some other stuff and sometimes use the wet Swiffer mops. I use the Lysol brand toilet bown cleaner as well. I sometimes use bleach to clean some stuff too.

elephant
11-18-2010, 12:20 PM
Phil, I use the same things. I probably need to use something less toxic but kills germs.

Sangye
11-18-2010, 01:36 PM
Did you know bleach is very hard on the lungs?

pberggren1
11-18-2010, 04:48 PM
Yes, I found out a while back that bleach is hard on the lungs. I no longer use it. I have heard that vinegar and water makes a good cleaner for almost anything. I know I use it for cleaning glass like windows and mirrors, and it works good. My parents are into using the brand name cleaners though. I will never be able to convince them to switch. Are there any other natural cleaners that you guys recommend?

marta
11-18-2010, 06:42 PM
Try the microfibre cloths Phil. They really really rock. All you need is water and they clean windows and everything better than anything without any chemical whatsoever. There are new ones out there a little more costly but they have silver in them and it keeps them from getting stinky if you let them stay wet too long. They are amazing. The orange cleaner I use is TKO - you can buy it anywhere, Home Hardware, I think even WallyMart has it. It's expensive, but it lasts a loooong time. It needs to emulsify in water before you can use it so I just put a little (2 or 3 capfulls) in a spray bottle with water and voila, organic, very nice smelling cleaner for a long long time.

Sangye
11-19-2010, 01:02 AM
I didn't know about the microfibre cloths, Marta-- thanks! (I actually just typed microfiber clots. I don't think I could clean my house with clots, even if they are natural. :blink::laugh: )

Sangye
11-19-2010, 01:05 AM
Phil, I use some natural products from health food stores. Since they look similar to chemical ones, maybe your parents would be willing to try one or two. Start with something you use everyday, like a kitchen counter cleaner.

JanW
11-19-2010, 02:47 AM
Marta -- it's funny that you say 10 Weggies in one place what an unusual sighting, because when I was at the symposium everyone 'complained' about how Weggies just dominate the thing -- like you would ask people, "what disease do you have?" and they would go "Wegeners -- what else is there?" Made me feel bad for the people with Churg-Strauss or Bechet's!

Geoff
11-19-2010, 07:02 AM
So I was thinking about the number of people who are sick working in that building. There are about two dozen people working in the building throughout the year altogether, however in my office and the one adjoining there have been 8 people working at those three desks over the last 3-4 years. Four out of the eight are currently sick with bizzare things and organ involvement. 50%!

I have heard about a condition called 'sick building syndrome' and one of my previous employers actually had the air/environment checked over as an unusual high percentage of employees complained of feeling 'un-well' in a new extension to the main office. Who knows what rubbish we are inhaling or ingesting. :glare:

Psyborg
11-19-2010, 07:03 AM
Is Wegners one of the more common of the rare Vasculitis types? I know there are some types that are more common for sure. Also out of curiosity how do the various forms of Vasculitis compare in the seriousness of the condition. I understand that some are even worse than WG if treated incorrectly. I want to make sure when people ask me that I'm not leading people to the wrong conclusions :)

Jack
11-19-2010, 07:31 AM
From the Lupus Foundation site -


Diseases Associated With Vasculitis

Vasculitis can occur in many different illnesses. Vasculitis can also occur by itself without any obvious associated infection or other illness. Some of the illnesses that can cause vasculitis are:

systemic lupus erythematosus
rheumatoid arthritis
polymyalgia rheumatica
scleroderma
Wegener's granulomatosis
temporal arteritis
cryoglobulinemia
erythema nodosum
tumors
leukemia
lymphoma

marta
11-19-2010, 02:06 PM
Marta -- it's funny that you say 10 Weggies in one place what an unusual sighting, because when I was at the symposium everyone 'complained' about how Weggies just dominate the thing -- like you would ask people, "what disease do you have?" and they would go "Wegeners -- what else is there?" Made me feel bad for the people with Churg-Strauss or Bechet's!

NO, that's funny. Weggies dominate a symposium. That's really funny. Just wait until the next one when we all show up wearing our gear. It'll be like a scene from some new age horror sci fi. "Feeed uuuuusssss"

JanW
11-20-2010, 03:57 AM
At the symposium when you register you get a button for which disease you are associated with. WG has like 200 buttons on the table, Churg Strauss maybe 30, everything else, in the teens, probably.

The Vasculitis Foundation started as the WG Foundation (or similar name) and only changed a decade or so ago, to try to bring all the diseases together to get out of 'orphan disease' status (less than 200,000 patients in US). Still didn't make it. You can feel safe saying to most people who meet you that you will never meet another WG patient. That's why when a doc sees a couple of hundred patients, they will be an expert.

Psyborg, to answer you question, all of the vasculidies can be pretty devastating, and misdiagnosis is really common because of their rarity.

Sangye
11-20-2010, 03:59 AM
Wow, the number of buttons says it all. What a great visual!

Doug
11-20-2010, 07:34 AM
Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

<>Behcet's Disease (http://www.vasculitisfoundation.org/behcetsdisease) <>Buerger’s Disease (http://www.vasculitisfoundation.org/buergersdisease) <>Central Nervous System (http://www.vasculitisfoundation.org/centralnervoussystem) <>Churg Strauss Syndrome (http://www.vasculitisfoundation.org/churgstrausssyndrome) <>Cryoglobulinemia (http://www.vasculitisfoundation.org/cryoglobulinemia) <>Giant Cell Arteritis (Temporal Arteritis) (http://www.vasculitisfoundation.org/giantcellarteritis) <>Henoch-Schönlein Purpura (http://www.vasculitisfoundation.org/HenochSchonleinpurpura) <>Hypersensitivity Vasculitis (http://www.vasculitisfoundation.org/hypersensitivityvasculitis)
<>Kawasaki Disease (http://www.vasculitisfoundation.org/+Kawasakidisease) <>Microscopic Polyangiitis (http://www.vasculitisfoundation.org/microscopicpolyangiitis) <>Polyarteritis Nodosa (http://www.vasculitisfoundation.org/polyarteritisnodosa) <>Polymyalgia rheumatica (http://www.vasculitisfoundation.org/polymyalgiarheumatica) <>Rheumatoid Vasculitis (http://www.vasculitisfoundation.org/rheumatoidvasculitis) <>Takayasu’s Arteritis (http://www.vasculitisfoundation.org/takayasusarteritis) <> Wegener's Granulomatosis (http://www.vasculitisfoundation.org/wegenersgranulomatosis)

That is the Vasculitis Foundation list.

Amazingly, a person I know from ****** became ill a few months back with Giant Cell Arteritis. I recalled the disease from the list, so brought his attention to the Vasculitis Foundation. As with our disease when we first encounter it, information- quick!- is a significant need for people with my friend's disease, and is greatly appreciated when it comes in one straight-forward package.

When I was recovering from my initial flare of WG, it became necessary to move from a large home to an apartment associated with a care center. It was he and his wife who organized a group of people from our ****** to move our furniture and things to the apartment.

There is a nice squaring of obligation~repayment here, with both parties enriched for the encounters.