Our private "hypotheses" about our wg-etiology

[Alysia]

Hi,
Thanks, Marta, for the enlightening post under the thread of Agent Orange and thank you all the others that wrote there. Tough-provoking….
So I thought that it can be interesting if we share and collect to one thread our private hypotheses about what lead to our wg, not necessarily in relating to the issue of Agent Orange or to the issue of vaccinations, but to WHATEVER….
My list is short one:

Genetics:
I don’t have more AI in my family. BUT my parents are relatives.

Environment:
Exposure to Mycoplasma in the month of the acute onset.

Stress:
1. guilt feelings.
2. 2 separations.

[Michael Bell]

Not at all sure, I have worked in the building industry so will have been exposed to silicon. I had no major stress in my life and there is no other member of my extended family who have an auto-immune disease. I hope that someday the good people researching this can find the cause or causes.
Mike

[windchime]

I had mono at age 16 and 18. Diagnosed with Wegs at age 20. Symptoms were limited to lungs no treatment at the time.

I also had vaccinations when I entered the Air Force at 18.

Tons of stressors in my life throughout the years.

No AI in my family until 2 years ago and my sister (only sibling) was diagnosed with Sjogren's.

We were both raised in NW Illinois, so there were plenty of pesticides flying around as this was corn country. I remember liking the smell of the mosquito spray when the truck drove by. Who knows what banned substance was in that.

[Pete]

My Dad died of complications from bullous pemphigoid (an AI skin disorder) at age 86. He had had this disease (or something like it) most of his adult life.

I worked in steel mills and foundries for awhile during my early career (before age 30). Was probably exposed to silica and asbestos.

Stress: In the months before disease onset, we moved from Massillon to Columbus (about 120 miles). I was responsible for getting our old house ready to sell and keeping it that way as my wife has recuperating from rotator cuff surgery.

[Debbie C]

I had alot of stress with divorce and my father passing. I don't know if any of my relatives have an AI disease,noone in my immediate family does. I really was pretty healthy until I moved from Florida back to Ohio and it was just a short time living in this house that I got sick. When I had the furnace ducts cleaned, the guy said they were so black( like tar ) that they probably heated the house with coal ????

[Rose]

1) I was under severe unrelenting stress for a year before becoming sick starting in August 1988
2) In September 1989 My son came home from Nursery school with gastroenteritis. My husband and myself caught the bug...I never recovered. This was the star of my WG journey although I was not diagnosed officially until 2008. I had suffered for 17 years with at times debilitating gastro issues and every test came back negative. When the lungs and kidneys became involved in 2007 I was diagnosed with WG and soon after treatment my gastro pain and discomfort improved by 100% I had a flare in 2010 and bowel symptoms raised their head again. A colonoscopy was performed and then they looked for signs of vasculitis and found them.
3) I am from a large family and all very healthy when young. My older sister was diagnosed with Pulmonary Artery Hypertension at the age of 66 years and died from this 2 years later. Not on the list of Auto-immune conditions but there is a connection. Another sister now 60 was diagnosed with RA at the age of 40 and then the youngest in the family was diagnosed with Hypothyroidism about 7 years ago. ( I was also diagnosed with this about 10 years before WG diagnosis though I had vasculitis in my bowel at the time though undiagnosed then) The others are all well and healthy in their 60's.

[ingemlb]

I have a long history of autoimmune disease starting at puberty. Severe endemetriosis. IBS, lots of bowel obstructions years of sinusitis. Ringing in ears. Chronic cough and bronchitis. IBD. chronic stomach ulcers. Recurring corneal ulcers and general eye inflammations and lots of acute infections (pneumonia, pleurisy, bronchial obstructions, c-diff, cellulitis ) most of these settled whilst I was on a trial protocol that was immuno stimulative. I have a feeling I either over stimulated the immune system which may have triggered the WG OR it was lurking around for years anyway.
Family history is both parents had diabetes. My father died from Multiple System Atrophy (MAS or also known as shy dragor) in 2005 aged 75. I have a niece with MS. My mothers brother had diabetes so did my fathers father and grandfather. My youngest son suffers from schizophrenia also now recognised as an autoimmune disease. Our oldest son has diabetes and hemechromatosis and I am a carrier with high ferretin levels. Have 2 brothers with bipolar and many psychic illnesses in our family.
research I have studied over the last 7 years would indicate the cause of all these are microscopic bugs that infiltrate the immune system and don't respond to antibiotics. We inherit a lot of these bugs from our parents and then life events add to the load including pollution immunisation being exposed via travel to bugs our immune systems didn't developed antibodies for when we were children and the crappy diets we live on with foods shoved full of pesticides hormones and antibiotics. At some stage some of us get to an overload situation and our immune systems either shut up shop or go amuck and attack things they should be leaving alone.
So ... Genetics is not only the genes we inherit but also a truckload full of bugs. We call it a pea soup of pathogens and at some stage it all gets too much and we succumb to disease.

[Titus3:2]

Interesting thread.I come from a remarkably physically healthy family,as far back as I can remember.Guess I am the unlucky one.I was raised in quite the dysfunctional family.I have always had abnormal feelings of guilt.W.G.certainly has caused me a lot of stress,and I firmly believe in my case stress has caused me to relapse at least twice.However I have no idea what could have caused me to develop this disease.Things are going good now,with a little help from Vodka.LOL.

[ingemlb]

ah yes forgot to mention the stress factor. We had a most stressful year last year. Mum was living in NZ and suffering from bladder cancer and diabetes, blindness. My sister was her carer. I made frequent trips over there when things got critical. Our youngest son had a total breakdown and we had to move him out of home into supported care which was the hardest thing I ever had to do. We had planned a holiday in Europe for 2 months in the middle of the year but both my husband and I were sick the entire time. I ended up back in NZ shortly after our return where Mum was hospitalised and broke her hip. I had power of Attorney and had to sign for her as she was spaced out on morphine for an operation which we were told she was highly unlikely to survive given the fact that after breaking her hip she suffered a heart attack further weakening an already weak heart. They then couldn't operate for a week so she was put on high morphine and hardly conscious but still in agony. All that week was incredibly stressful. She survived the operation but never made it back to my sister's place and had to end up in a hospice. On my return from NZ had sinus surgery. Shortly after that ended up a week in hospital with severe diarrhea, dehydration and a UTI with high fever. Then came back home from that to be told Mum had stopped eating and was dying. She took 3 weeks to die and died one week before Christmas so we were rather busy organising funeral services and christmas as we had visitors coming to stay with us over Christmas. It was Boxing day (26th of Dec) that all my vasculitis symptoms started and by the 20th of January I could hardly move with pain and on the 21st was admitted to hospital where I stayed for 5 weeks. That's when I was diagnosed with Wegener's.

So I would have to say STRESS was a HUGE factor in my life. Has been ongoing for many years. I was carer for my son ever since I can remember then for one year before heading to NZ Mum moved in with us too so I was her carer. And at the same time not coping very well with my own health.

Also need to mention that airplane travel always made me much more ill. My last few years at work involved constant long haul trips and we believe that made all my conditions a whole lot worse. I find now when I fly anywhere I end up sick at the other end. It's the deprived oxygen in the cabin coupled with the nice way the germs are spread around amongst everyone that does it. Also flying itself is stressful. Last year I had 4 flights to NZ (only 3.5 hours each way) and then flew from Melbourne to Kuala Lumpur (8 hours) Kuala Lumpur to Frankfurt (14 hours) Duesseldorf to Spain (6 hours with stopovers) Spain to London (2 hours) then London to Kuala Lumpur(14 hours) and Kuala Lumpur to Melbourne (8) hours. Of course stay overs in between but all that flying around meant I never recovered the entire 2 months. Many of my joints were aching and I only realise now being on Prednisolone how much pain I was in most of last year! It's amazing what you get used to

[mishb]

Wow, it appears that I have had a number of AI's on Marta's list for some time.

Endometriosis at age 25
Glandular Fever (not an AI although Chronic Fatigue is) at age 29
Meniere's Disease at age 35
High Blood pressure at age 39 (not an AI but I see a pattern in age forming)
Rheumatoid Arthritis at 43 - Diagnosed at 44 (out of pattern)
Uveitis at 45
Scleritis at 45
Wegener's Granulomatosis diagnosed at age 45 - although it took over 12 months for diagnosis)
Mixed Connective Tissue Disease at age 46 (but was probably there at 45 as well)

Everything (well nearly) appears to have happened at the ages ending in 5's and 9's
.......arghhh, I am 49 this month - what is next??? my lovely husband said - Remission

Genetics:
My mums sister, a few years ago, was diagnosed with Rheumatoid Arthritis, so was her son.
I don't know of anyone else with an AI disease in my immediate family.

Environment:
Exposure to black mould found in walls during a bathroom renovation

Stress:
1. Serious Double semi trailer Vs. my tiny car, accident in March 2009. Thankfully apart from a few aches and pains, I was not hurt but the potential to be, could have been life threatening.
2. Breast lumps found in late June 2009
3. Mammogram and ultrasound found 18 lumps in one breast and 23 in the other in early July 2009
3. Step father of 30+ years passed away unexpectantly as a result of blood clot in groin in July 2009
4. Core biopsy on 3 breast lumps the day before step fathers funeral July 2009 - turned out to be benign fibroadenoma's.
5. Step fathers funeral and burial July 2009

High fever presented on night of funeral and woke up with sinusitis and blocked ears the next morning.
- Diagnosed with WG August 2010

The rest, as they say, is history