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Old 02-16-07, 02:05 PM   #1
EJ123
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Does/has anyone know/known someone with autoimmune disease?

My mom has been sick ever since the beginning of 2006, but it started to get worse during my birthday in June of 06. She has an autoimmune disease, but that offeres a wide range of specific diagnosis; however, she does have interstichial lung disease. So the two major symptoms are puffy swollen fingers, and an inability to breathe fully. I just wonder if she is going to die soon, or in a few years. She doesnt look noticably sick at all, and she can still do lots of things throughout the day, but the morning is the hardest. She's going in for a liver biopsy soon, and she has had a CT scan, and will probably go for a brain mri also. I was just curious to see if anyone else has known somebody with these problem, and what they did, or how theyre doing now.
Oh yeah, our vent thing blows out some weird blueish lint crap that the carpet picks up in specif spots, and it gets really bad, so who knows what we are breathing in. Iguess it could be a mold issue, because we have two small balconys over windows, and they leak when it rains hard, which travels through the drywall, and drips down, so perhaps mold is developing. :|
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Old 02-16-07, 02:22 PM   #2
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I assume this is different that AIDS (Auto Immune Defenciency Syndrome) or how ever you spell it.? Or is AIDS Acquired Immune Defenciency Syndrome......hell I don't know! I found it and I was wrong all the way around.........'acquired immunodeficiency syndrome' Damn I am dumb sometimes.
I can't say I know of anyone with what your describing.
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Old 02-16-07, 02:23 PM   #3
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En route to seeking other information during the past several years , I'm sure I've come across some medical abstracts regarding a relationship between certain molds and lung/auto-immune problems. I'm not sure I can locate them again very quickly, but you can do a search on http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed.

I assume she's seeing a pulmonologist. Has she seen either a rheumatologist, immunologist, or infectious diseases specialist? Does her doctor know about the stuff in your air vents? Your county extension agent might be able to tell you where you can get the suspected mold tested for id.
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Old 02-16-07, 02:25 PM   #4
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I assume this is different that AIDS (Auto Immune Defenciency Syndrome) or how ever you spell it.?
I can't say I know of anyone with what your describing.
Actually AIDS = Acquired Immune Deficiency Syndrome and is technically really not an auto-immune disease. AIDS is thought to be caused by a virus that destroys the immune system, thus rendering you vulnerable to secondary infections. AIDS doesn't actually kill you, it's the infections that eventually gets you.

Autoimmune diseases, on the other hand, are where the body's own immune system attacks it; failure to recognize its own tissue as "self" and attacking it like a foreign invader. And cancers may be considered an autoimmune disease because it's a failure of the immune-system to differentiate from healthy vs. mutated "self".

My step-mum has leukemia. Luckily it's an easily treated form and was caught early enough. She's been undergoing treatment at Stanford for the past couple of months and have been making good progress with chemo.

I've always had issues with asthma (over-reacting immune system to a non-threat). Had it once when I was 9-years old and it went away until I was 26. Then it came back in like gangbusters and forced me to quit bike-racing. I've found the air I breath affects my asthma greatly. Dry cold air in the winter is harsh and I need a humidifier to compensate. Moving south to warmer climates helped tremendously. But going further south to LA is always a pain, my asthma starts acting up as go over the hill in Camarillo and drop into the valley with all that nasty smog.

Food allergies also affect my asthma. Through elimination testing, I've narrowed the biggest culprits as dairy and wheat/gluten foods. So avoiding those allows me to live without asthma attacks. I still carry an inhaler of albuterol or Primatene just in case though.


Have you gotten that blue lint tested?

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Old 02-16-07, 02:29 PM   #5
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A friend of ours used to have a really bad case - couldn't work, couldn't do anything. They were living in NJ at the time. She went back to California for a 2 week visit - and by the time the vacation was over, was completely back to normal.

Came back to NJ and the problem came back within a few months - and a few months after that had moved back to California permanently - and the problem went away permanently too.
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Old 02-16-07, 04:17 PM   #6
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Have you gotten that blue lint tested?
How do I get it tested?
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Old 02-16-07, 04:34 PM   #7
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My mom was once diagnosed with lupus, which is an autoimmune disease.

As it turns out, it was a misdiagnosis.

I always tease her that it was not lupus that she had, rather it was Tanner Boyle.
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Old 02-16-07, 04:43 PM   #8
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Her doctor should be treating her, for most auto immune disorders steroids (Prednisone) can suppress the immune system and reduce or eliminate symptoms. Sorry to hear this, hope she is well soon.
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Old 02-16-07, 04:45 PM   #9
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She was on cortico sterioids, which she said helped amazingly (her finer joints are in pain a lot...could be rheumetoid arthritis) but one of doctors didnt reccomend them.
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Old 02-16-07, 04:47 PM   #10
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Dude, I missed the mold part on my first read. You need to get someone in there quick to check for possible mold. Certain molds can be very dangerous.

I am not trying to scare you or anything, but this been a big problem in the Metroplex for a long time.
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Old 02-16-07, 04:58 PM   #11
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How do I get it tested?
Your county extension agent might be able to tell you how to collect a sample and where you can get the suspected mold tested and identified.
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Old 02-16-07, 05:01 PM   #12
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EJ, this may sound like a strange question, but how old is her home, and where does that vent lead?
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Old 02-16-07, 05:07 PM   #13
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It is 16 years old, and Im not sure where it leads too. The attic? It could be the dryer lint, but I thought that goes outside.
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Old 02-16-07, 06:01 PM   #14
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If the Doctor isn't willing to treat, then she needs to see a specialist who can/will. Sure there are side effects to steriods, but an experienced specialist can fine tune the dosage to minimize side effects. Many people can live much better lives with the side effects of the meds, rather than the sysmptoms of the AI disorder, it's a trade off. Have her ask for a consult to a specialist.
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Old 02-16-07, 06:09 PM   #15
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She first saw a doc in a box, then a pulmanary specialist, then another one in arlington, and now she is seeing a big ranking doctor at UT southwestern. She has an inhalor though.
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Old 02-16-07, 06:51 PM   #16
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She first saw a doc in a box, then a pulmanary specialist, then another one in arlington, and now she is seeing a big ranking doctor at UT southwestern. She has an inhalor though.
Well get the furnace and ducts cleaned well and have a HEPA filter system put on the furnace output ducts.

If it's chronic Auto Immune, she'll likely need drug treatment to calm down the immune system IMHO, best to you both, it's hard isn't it.

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Old 02-16-07, 07:49 PM   #17
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Yes... my wife is a type 1 diabetic of 25 years. Type 1 diabetes is an autoimmune disease of the pancreas.

Doesn't help with your mom's issue, but your questions was does anyone know someone with an autoimmune disease.

It does take her longer to heal from simple things like cuts and bruises (bike crashes last for quite a while!) and she's fatigued by the disease, but otherwise she's in very good health.
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Old 02-16-07, 11:14 PM   #18
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My mother has fibromyalgia, Reynaud's syndrome, and a little psoriasis. Like every post-pubescent female on my dad's side of the family, I have endometriosis. While not yet proven, there is a great deal of suspicion that it is an autoimmune disorder. I buy that argument, based on some personal experiences, and I believe it will be classified as such within my lifetime. I also have a little psoriasis and a great many allergies.
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Old 02-17-07, 12:54 AM   #19
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I have exzema on a couple of my fingers.

It started while taking acne medication in high school. The acne medication caused an acute allergic reaction ("fixed drug eruption") which, after I went off the meds, subsided into a yeast infection (on my hand...eew!). Once that went away, it became exzema.

As to your mom's condition. I'd keep doing what you're doing, finding new doctors to talk to.
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Old 02-17-07, 07:42 AM   #20
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My wife has Idiopathic Thrombocytosis Purpura (I think that's how it's all spelled). It's an autoimune disorder that causes the body to destroy blood platelets at a higher rate. Normal platelet counts are 150k-300k, hers are normally 50k-100k. The risk is that cuts bleed longer, she bruises easier, and if her platelets get below 30k, she's at risk of internal bleeding. She fatigues easier as well.

While most women's platelets drop a bit during pregnancy, hers went up to the normal range and have stayed nearly normal since (roughly 100k-120k).

The two standard treatments are high doses of Prednisone (tried that once, it was horrible) and spleenectomy. Neither is a cure and the ITP can return afterwards, so she kept her spleen and will only use prednisone in extreme cases.

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