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Ponderable!

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15 years 6 months ago #3228 by Christine
Ponderable! was created by Christine
When doing mindless chores my mind often turns to other things! With ITP we go through the various stages - anger denial and acceptance (aka "why me?!") Then we think what may have caused the "problem" even tho' it is ideopathic. My thoughts on the cause of my problem are from crop dusting in the 60's (I am a farm kid) It was shortly after watching the crop dusters that I started having nose bleeds and unexplained bruising (bear in mind I am a farm kid and grew up with four brothers) Various people I have met with the problem have their own theories; I am interested to know other peoples on their cause. This is just a ponderable and is certainly not useful to finding the "cure" in any way!!!! Christine :unsure: :unsure: :unsure:
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15 years 6 months ago #3231 by RodgerMac
Replied by RodgerMac on topic Re:Ponderable!
LOL My brother and I had this very discussion a few month back. I have ITP and my brother has Sjögren's Syndrome. We blame both on a small mining town in colorado that no longer exists (map shows it but google earth shows nothing there). It was part of the Superfund cleanup in the late 70's and 80's, and is still being monitored. My broither found out about his Sjögren's Syndrome for about five years now, I found out I had ITP last August. So I believe the crop duster theory is very valid. :laugh:
  • Sandi
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15 years 6 months ago #3236 by Sandi
Replied by Sandi on topic Re:Ponderable!
I blame heredity. Both my sister and I have had ITP, my other sister has Discoid Lupus and I have SLE. We just inherited a predisposition to autoimmune disorders and somewhere in life, met our triggers.
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15 years 6 months ago #3238 by tigereyes
Replied by tigereyes on topic Re:Ponderable!
I blame mine on black mold. When I moved out and on my own I rented(and still currently live) in a converted garage. Well when they poured the foundation for the addition (my bedroom) they didnt pour it correctly to allow for drainage. And it soaked up into the foundation and into the carpet padding. After about 2 yrs of living there I changed the carpet on my own dime...I had no idea this was under the carpet. Once they pulled up the carpet the entire capret pad was black with mold. Once it was out alot of my problems stopped, but I think I had a predisposition to autoimmune and this trigged it all.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • Sandi
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15 years 6 months ago #3245 by Sandi
Replied by Sandi on topic Re:Ponderable!
I think you are all describing your triggers.
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15 years 6 months ago #3253 by Christine
Replied by Christine on topic Re:Ponderable!
Yes Sandi I was. But these thoughts are just when I am "I have to get a life moment"!!!!!!!! Christine
ps. I do have a life :) :) :)
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15 years 6 months ago #3255 by rhonda
Replied by rhonda on topic Re:Ponderable!
Since I am the only child of 6 that has a bouquet of autoimmune diseases, I figure that my older sisters left the genes for me. Well I thought it was Jeans, and I took up the whole bunch for us to wear.
Actually If something was to create it, I would have to point my finger to my kidney disease. When I was first diagnosed with it, I had a negative ANA, etc. As I tapered off of prednisone, and chlorambucil, I started to have this pain, and some time through the regimen, I had a positive ANA. Over the years my autoimmune diseases has been diagnosed in groups or alone. The latest is ITP and Lupus. When I was in my 20’s I had endometriosis, and surgery. I would think if Lupus could have been triggered, it would have been triggered at that point. Not over 20 years later. What I have read about autoimmune diseases, they do tend to run in families, but not everyone gets the same disease. My father has diabetes, my aunt asthma, and both my mother and brother has a hypothyroid. My endocrinologist said that with the thyroid if a sibling or parent has a hypothyroid I have a high chance of having a hypothyroid. But mine is considered hyper. None of this shows any pattern. Maybe it is the mixture of genes of my parents together. Maybe my mother has a gene when mixed with a gene that my father has, it can cause autoimmune diseases in the off spring. But it doesn’t effect all of the off spring. It is sort of like the XY and the XX genes. Some times you get a boy, some times a girl.
  • Sandi
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15 years 6 months ago #3262 by Sandi
Replied by Sandi on topic Re:Ponderable!
Exactly, Rhonda. I already said what my sisters and I have/had. Sadly, my daughter has Graves Disease and asthma. I passed down the autoimmune crap and it is different. My son has eczema. So far, my other daughter is okay (knock HARD on wood).
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15 years 6 months ago #3271 by juliannesmom
Replied by juliannesmom on topic Re:Ponderable!
One of my mother's well-meaning but ill-informed friends suggested to her that my teen's ITP was due to us moving onto a golf course, and all the chemicals used to treat those greens. Of course, I scoffed, because before we moved, we had crop dusters all around us and cotton defoliant and other pesticides when we lived in a more rural area. If ITP was triggered by chemicals, surely those would have done it. Then, right after we left the golf course, and moved to another rural area (couldn't adapt to neighborhood life after years of rural bliss), my teen remitted. She now lives in remission, surrounded by miles of peach trees that have to be sprayed with all kinds of stuff to keep them healthy. She's had eczema all her life, though we weren't told that's what it was until after ITP surfaced. Genes, environment, etc. We can't control it all. Even knowing the trigger doesn't reverse it if you remove the trigger. I spent hours early in this thing trying to figure out what happened, how to fix it, and where we needed to go. I told a friend if he heard we'd left the country, he'd know I found it. Acceptance was the hardest part of the process.
Norma
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15 years 6 months ago #3275 by server
Replied by server on topic Re:Ponderable!
I've been thinking about this a bit too. I'm all for believing that chemicles could be a cause or have an effect on ITP. I didn't grow up around any dusters or anything but I have always been a "clean freak". I use all sorts of different chemicals to clean. One in particular that comes to mind is a bathroom cleaner called "The Works" It's strong stuff.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
15 years 6 months ago #3276 by
Replied by on topic Re:Ponderable!
Sandi wrote:

Sadly, my daughter has Graves Disease and asthma. I passed down the autoimmune crap and it is different. My son has eczema. So far, my other daughter is okay (knock HARD on wood).

When we start laying blame who in the heck do I blame? My Dad had no autoimmune disorders, my mother had not autoimmune disorders, my paternal grandparents had no autoimmune disorders, my maternal grandfather had no autoimmune disorders, my maternal grandmother died at a very young age so she is questionable - who do I blame? My sisters don't have any autoimmune disorders but my older sister's oldest daughter has RA - she can't blame it on her mother but I guess she could blame it on Aunt Melinda.

I don't like laying blame - what good does it do?
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15 years 6 months ago #3294 by tigereyes
Replied by tigereyes on topic Re:Ponderable!
Melinda
Good point. No one in my family has autoimmune diorders. With the exception of me. I have an aunt who is diabetic but due to weight. Im the only one who wears glasses. My dad just started wearing them and his are for reading not distance. So I have no idea where any of my stuff comes from. I just say Im special

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
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15 years 5 months ago #3300 by Ann
Replied by Ann on topic Re:Ponderable!
My step-mother developed myeloma at the same time as I was diagnosed with ITP. One cause of myeloma is thought to be pesticides and farm chemicals. She has always walked and ridden horses through farmers' fields. I didn't do as much country walking as she did but it does make me wonder.

By the way, notice that those talking about inherited autoimmunity are those with secondary ITP.. ie secondary to Lupus or something else whereas those with primary ITP tend not to have autoimmunity in the family. I have primary ITP and no autoimmunity in the family.
  • Sandi
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15 years 5 months ago #3314 by Sandi
Replied by Sandi on topic Re:Ponderable!
Well, neither my parents nor their families had any autoimmune disorders. My fathers side had eczema. I do have a cousin though with MS and then there are me and my sisters. My Mom had lymphoma, and I read an article once about a connection between certain cancers (lymphoma being one) and autoimmune disorders.

Maybe it's the gene combination from both parents that does it, even if neither parent has a disorder. I don't blame my parents, but I do believe it was a genetic predisposition.
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15 years 5 months ago #3414 by server
Replied by server on topic Re:Ponderable!
my dad had MS, died of complications from it. My mom and her dad died from cancer.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
  • Sandi
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15 years 5 months ago #3419 by Sandi
Replied by Sandi on topic Re:Ponderable!
I don't know, Ann. I didn't have any autoimmune problems in my family - none that I knew about from parents/grandparents.

I also had primary ITP for 8 years before it became secondary. I wonder if some people never end up with secondary ITP because they don't get their Lupus trigger.
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15 years 5 months ago #3421 by JazzenJanzen
Replied by JazzenJanzen on topic Re:Ponderable!
I think about this a LOT as of late... just trying to work things out..

I blame it on getting sick at two weeks old. (The doctors never figured out what I had or what was wrong.... scared my mom pretty bad to boot...)
Ever since then I was ALWAYS getting sick and easy to bruise... but nothing so intense that we looked into it (3 older brothers makes for a rowdy house...and bruises are bound to happen).
4 years into college I found out my count was 60.. but didn't know anything about ITP or autoimmune diseases.. and didn't think anything of it. 4 years later it's still cruising at 60... and then a month ago it dropped to 12... and here I am! .... I blame the sudden drop trigger on stress, lack of sleep, and sugar... *shrug*
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15 years 5 months ago #3424 by bride2010
Replied by bride2010 on topic Re:Ponderable!
I have no freakin clue.

My mother's family is their own autoimmune cluster- of her 7 siblings, 4 have autoimmune diseases from a young age (RA, Crohn's, Graves), and I have 2 cousins on that side with Lupus and 2 with RA. I had ulcerative colitis at 16, and diagnosed with ITP at 26.

My environment couldn't have been better... was breastfed till age 1, mom never let us have soda and junk food, grew up in two brand-new houses in the suburbs built on virgin land, was never a sick child.

One thing that sticks out is that one of the theories for what triggers UC (my original autoimmune disease) is being "over-sanitized", not being exposed to enough intestinal germs from other people to build up an immunity unless one day you get a bad one and your screwy immune system goes haywire.

People who live in houses with 3 or more toilets are the most prone to the disease- ha. That would be me. And I was never one to use public bathrooms, I couldn't "go" unless I was at home. That's my only theory behind it.
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15 years 5 months ago #3525 by julia
Replied by julia on topic Re:Ponderable!
Well, im going to blame my Mother and her awfull cooking,lol, making me sick so many times prob from food poisoning that my body just didn't know what was good and bad anymore. There was always some food she was asking me to sniff to see if it was off as she has no smell & ignores any dates. She even boiled a christmas pudding in a dish for my dad, the dish melted into the pudding & she just mixed it up & poured custard over the top!
Also the electronics factories i used to work in with carsonogenic chemicals.
My dad for smoking, giving me Asthma and stunting my growth! I remember going for an interview and they stood me by the machine i was going to be working on & i got told i could not do the job because of my height! I went home in tears telling my dad it was his fault that im short lol.
Not to forget the porrige with blueberries id never had before ITP but soon after enjoying this breakfast i was diagnosed.

Julia
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15 years 3 months ago #6329 by eklein
Replied by eklein on topic Re:Ponderable!
I knew I had read about black mold here, did a search and found Jennifer's story. Today I moved something in our back bedroom (where we watch tv every night and sometimes I sleep) and found tons of black mold on one wall. I should look under the carpet. I'm freaking out about what needs to be done next, how bad it could be, how to find someone reputable to tell me, and whether this helps explain my chronic cough and sinus problems. If anybody knows anything about how to deal with mold in a house, or find someone to deal with it, please let me know!
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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15 years 3 months ago #6330 by Sandi
Replied by Sandi on topic Re:Ponderable!
Not all black mold is deadly - you need to know what kind it is. We had some in our bathroom due to a poorly installed shower surround and I was horrified. Turned out it wasn't as bad as I thought. We got rid of that and had tile put in.

However, you should get it tested and yes, it could cause chronic sinus problems (although I have that and don't have mold).

Don't freak - just get your phone book. There are home test kits, but I'd rather have a professional for that.
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15 years 2 months ago #6434 by tychid
Replied by tychid on topic Re:Ponderable!
My daughter has had ITP for almost 4 years. She has been looked at by a couple of doctors and they both said one thing "the cause tends to be linked to some unknown bacteria". I think that my daughter had mono and/or or strep at the same time. We too had some black mold in our previous house. This is all very interesting. Another person's daughter in my same home town has recently been told she had IPT. She said that her daughter has always had sinus issues. When she isn't coughing up stuff then her platelets are low. If she is coughing the platelets are higher. I wish they could figure out something.
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15 years 2 months ago #7330 by Tad Moody
Replied by Tad Moody on topic Re:Ponderable!
My first signs of bruising, difficulty in stopping bleeding, and petechiae was in the late 1970's.

I was on week long houseboat vacation in Utah and had been consuming enormous quantities of gin and tonic. (Tonic can cause a low platelet count).

So, therefore I blame my ITP trigger on going to Utah.
:laugh:
15 years 2 months ago #7334 by
Replied by on topic Re:Ponderable!
Now I would believe that Tad Moody if you said northern Utah triggered your ITP - but southern Utah is neat and would never do that.
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14 years 11 months ago #9231 by 28lorelei
Replied by 28lorelei on topic Re:Ponderable!
At least I can blame my genes for my ITP, although I rarely even think about it :P