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Old 07-17-2012, 09:42 AM #111
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Hi. I just thought of updating you with my visit to the pulmo yesterday.

Well, he strongly recommended that I should have the bronchoscopy. Hesitantly, I agreed because he does not want to start me on medication without knowing the cause of the nodule and inflammation. However, he just expects to see from the biopsy either the kind of bacteria or if its cancerous. The biopsy, he said, will not show if my nodule is Sjorgren's or Sarcoidosis.

He added that if he did not see my last year's CT scan, he will think the inflammation/scarring may be due to the TB I had in 2000-2001. But, since there is a progression and I have a steady decline in the lung function, he does not want to wait and see. He mentioned in passing that he does not want to give me antibiotics, which he thinks have major side effects, right away without knowing the kind of bacteria. I asked if he will consider steroid, he said to wait for the biopsy result.

My question: would anyone know why the biopsy will only show the kind of bacteria and determination of cancer, but not Sjorgren's or Sarcoidosis?

The Shirmer's result last Friday was <1 in both eyes. I have now dryness in throat, mouth and nostrils. My stomach is bothering me.
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Old 07-17-2012, 09:57 AM #112
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I will be thinking about you for the rest of the summer.

You can send me a PM about your test and its results. But I don't know when I will see it...so there will be some delay in my response. We only have computer access on free wifi when we go to the laundromat on vacation. Otherwise we are too far into the lake for service. We barely have cellphone coverage. And for that we have to sit outside the house.

We'll be gone until about Aug 25th give or take some days.
Alot depends on our cat who has cancer. If she gets sick it will be euthanasia up there, or return home early. The Vet thinks her cancer is pretty stable, and her blood work was good. I have her prednisolone to give her while we are up there, as well. She just loves it up there, and may do well just because of the healing nature of the place! This will definitely be her last summer. She surprised the Vet and us by living long after the predictions for her rare cancer. We didn't expect to have her at all up there this year!

Looks like we will leave Monday 23rd. It is 90 already this morning and predictions are for 102... and we do NOT have A/C except for the small portable in the bedroom.

I really hope your doctor finds a solution for you. You have been suffering enough.
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Old 07-17-2012, 11:26 AM #113
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I will be thinking about you for the rest of the summer.

You can send me a PM about your test and its results. But I don't know when I will see it...so there will be some delay in my response. We only have computer access on free wifi when we go to the laundromat on vacation. Otherwise we are too far into the lake for service. We barely have cellphone coverage. And for that we have to sit outside the house.

We'll be gone until about Aug 25th give or take some days.
Alot depends on our cat who has cancer. If she gets sick it will be euthanasia up there, or return home early. The Vet thinks her cancer is pretty stable, and her blood work was good. I have her prednisolone to give her while we are up there, as well. She just loves it up there, and may do well just because of the healing nature of the place! This will definitely be her last summer. She surprised the Vet and us by living long after the predictions for her rare cancer. We didn't expect to have her at all up there this year!

Looks like we will leave Monday 23rd. It is 90 already this morning and predictions are for 102... and we do NOT have A/C except for the small portable in the bedroom.

I really hope your doctor finds a solution for you. You have been suffering enough.
Thank you Mrs.D. I try to restrain myself from feeling sorry, but I cannot help by cry when I read the part : ".....You have been suffering enough".

Enjoy your vacation!
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Old 07-17-2012, 04:22 PM #114
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In order to determine if the inflammation is coming from Sjogren's they would have to see actual infiltrates. Even in a lip biopsy they might see inflammation, but that is not enough for a diagnosis. They must identify infiltrates (and a certain amount) of lymphocytes, histiocytes and plasma cells for a diagnosis.

Apparently in order to determine if this is coming fro Sjogren's, you'll need the lip biopsy.
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Old 07-17-2012, 05:40 PM #115
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Ideopathic steady as she goes. dont put the cart before the horse. you wont know anything for sure until after the broncoscopy is done. it may well be an infection that can be treated with an antibiotic specifically for it. i understand its nerve racking. i often feel like calamity is hanging over my head but we have to keep putting one foot in front of the other until we come out the other side. its the only thing we can do. i know many people who have many nodules and the overwhelming majority of people with nodules are from present or past infections or coating of particles they inhaled and are not cancerous and are not sarcoidosis.
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Old 07-18-2012, 07:12 AM #116
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In order to determine if the inflammation is coming from Sjogren's they would have to see actual infiltrates. Even in a lip biopsy they might see inflammation, but that is not enough for a diagnosis. They must identify infiltrates (and a certain amount) of lymphocytes, histiocytes and plasma cells for a diagnosis.

Apparently in order to determine if this is coming fro Sjogren's, you'll need the lip biopsy.
Thank you en bloc.
I am now open to lip biopsy. But, my concern is what if I dont have yet the number of infiltrates enough to be graded with Sjorgren's. I know this is putting the cart before the horse, as echoes put it, but with the potential discomfort of lip biopsy, would it just be an exercise of futility? If this happens, I am not sure if the doctor will treat me. Anyway, one step at a time.
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Old 07-18-2012, 07:20 AM #117
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Ideopathic steady as she goes. dont put the cart before the horse. you wont know anything for sure until after the broncoscopy is done. it may well be an infection that can be treated with an antibiotic specifically for it. i understand its nerve racking. i often feel like calamity is hanging over my head but we have to keep putting one foot in front of the other until we come out the other side. its the only thing we can do. i know many people who have many nodules and the overwhelming majority of people with nodules are from present or past infections or coating of particles they inhaled and are not cancerous and are not sarcoidosis.
The pulmo kept on saying about bacteria referring to my previous ileocecal TB. He even added thta he does not want to give me treatment of antibiotic because of its major side effects. I was thinking if its my previous TB, that has been treated. I dont know if a previous treated TB can become active again. Or, I dont know if I have on-going infection.then with the progression, I dont know what to think. I am praying for hte least problem.

Thank you echoes.
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Old 07-18-2012, 07:22 AM #118
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Dear Mrs.D, echoes and en bloc,

I want to say that I am truly grateful for all your time in answering my posts. It means a lot to me.

Thank you.

Mary
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Old 07-18-2012, 10:01 AM #119
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Thank you en bloc.
I am now open to lip biopsy. But, my concern is what if I dont have yet the number of infiltrates enough to be graded with Sjorgren's. I know this is putting the cart before the horse, as echoes put it, but with the potential discomfort of lip biopsy, would it just be an exercise of futility? If this happens, I am not sure if the doctor will treat me. Anyway, one step at a time.
If you have 'active' Sjogren's the correct amount of infiltrates will show. It's not like you have to build up the disease process. The degree of damage will change over time, but the active disease process is either there or it's not. BTW, I am also a believer that even some infiltrates (in the presence of inflammatory damage) indicates an abnormal process...maybe just 'inactive'. If no infiltrates are present it's pretty clear that it's not Sjogren's. With the problems you're having IF it's Sjogren's, your biopsy should reflect this.

Just remember if you plan to do this, get it done before you start steroids...as I am a believer that they may alter the results and degree of inflammation.
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Old 07-18-2012, 07:56 PM #120
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If you have 'active' Sjogren's the correct amount of infiltrates will show. It's not like you have to build up the disease process. The degree of damage will change over time, but the active disease process is either there or it's not. BTW, I am also a believer that even some infiltrates (in the presence of inflammatory damage) indicates an abnormal process...maybe just 'inactive'. If no infiltrates are present it's pretty clear that it's not Sjogren's. With the problems you're having IF it's Sjogren's, your biopsy should reflect this.

Just remember if you plan to do this, get it done before you start steroids...as I am a believer that they may alter the results and degree of inflammation.
I will remember your reminder about getting the lip bipsy before taking the steroids. I'm sorry but I don't understand well the active and inactive sjorgrens. You mean of inactive as showing only some abnormalities but does not show enough infiltrates to make the proper grading?

Btw, I talked with the pulmonologist today about sarcoidosis. He said that it can or it cannot show in the biopsy depending on the severity.

Thank you.
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