Tuberculosis and Sarcoidosis - Need help!

I have been going to Mayo clinic for little over a year and the doctors dont agree on a diagnosis. Most of my doctors dont know what wrong with me and the other doctors think I have Sarcoidosis. My liver doctor was quite sure that I had Sarcoidosis but wanted to check one more thing to rule it out. He said that Sarcoidosis and Tuberculosis act the same way the only difference is the type of granuloma each disease produces. We are talking about Noncaesating and Caesating granulomas. My liver doctor wanted me to get a PPD test for tuberculosis. I remember getting one when I was a kid but it has been so long ago. He asked me if I ever got the TB shot, and I dont think so. The TB shot was administered some time ago to countries with high evidence of TB. Not many people in the United States received the TB shot. Well anyway I got my 48 hour time test and it came back positive. So this is strange! I am not coughing my head off and I only have a few scars on my lungs. Has anyone had a TB test done recently. Am I the only one with this problem. The liver doctor only decided to do the test is because I have a granuloma on my liver. My husband had to be tested because he is in the military and they are about to go out to sea. My husband test came back negative. Thats a relief but it doesnt help me.

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Before I was diagnosed with sarcoidosis, I had a TB skin test that came back positive. I did have a cough, so needless to say I was terrified. They did the sputum test (not sure of the exact name), but it came back negative. It was explained to me that I must have been exposed to TB, but never developed to the active disease. They called it latent TB. My sarcoidosis was finally diagnosed via a bronchosopy. I was then treated with Prednisone for the sarcoidosis but I had to take 9 months of Isoniazid to keep from getting the active form of TB. My ENT doctor told me that sometimes people with sarcoidosis can get a false positive on a TB skin test, but that you have to be treated with the Isoniazid to be safe. I don't know if he's right on this. I have never had a relative with TB, I have never travelled out of the country or worked in a health care position, so I'm not someone who would be expected to be exposed to TB. The research I did on TB says that it is fairly difficult to catch from someone. You have to have quite close day-to-day contact with someone before catching it. I have no memory of anyone having this and I don't know where I could have been exposed to it.

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Priscurl is the one to talk to about this. She says there is strong evidence to link TB & Sarc. I hope that she answers you.

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I wonder if every sarc patient has had a tb skin test? If the tb skin test comes back positive isnt that a way to prove you have Sarcoidosis or Tuberculosis.

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Hi Clcsj,

The way it was explained to me is the skin test can be a false positive and I have had my TB shot when I was little and a Hepatitis B series a yr ago.

The proper way to dx TB is lung tissue.

Is it possible you have both? Why not? Look at how many people on this site have more than 1 issue, just about every single one. And if it is someone new on here, if they sit and think long enough they will link more together.

So I say it is very possible you have both and should be treated accordingly. Sorry you are having so many issues. We all do.

Gone Natural

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I was diagonsied with lung Sarc in the beginning of 2007. I had 2 TB tests in Sept. 2007...both Negative.

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I was tested a few years back before starting enbrel when they thought I had RA, before my sarc dx. The skin test was negative. I think the only way you are going to know which one or possibly both you have is going to be a biopsy.

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clcsj,
Chatch's ENT is right on the money about the meaning of a positive PPD. Truth be told I see these overread all the time. When I was still doing office visits I used to have my nurses insist that a doctor confirm all positive PPDs and you'd be amazed how many really weren't. Still, once that data is entered (and it sounds like for you that would mean 15mm of induration at 48-72 hours) you have to go with it and that means the isoniazid for 9 months for latent TB. The bad news is that this doesn't rule out sarcoidosis. In the absence of TB type symptoms you should really try to get a tissue biopsy of a granuloma to determine the cause (there are more than the two causes, but each has it's own type).
For what it is worth, I get PPD tested at least annually and sometimes more often and have never been positive - largely due to the low infectious rate of TB since I have treated plenty of patients with proven disease.

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Dear clcsj-
You're liver doc was correct. The reason he asked you about the TB vaccine is because the vaccine (BCG) can cause hepatitis and granulomas. I agree that it is unlikely that you had the shot if you were born in this country. The other reason your PPD might have been positive is because non-tuberculosis mycobacteria can cause reactions to the PPD. Non-tb mycobacteria such as Mycobacterium avium (MAI) has often been posited as a "cause" of sarcoidosis. Usually MAI is accompanied by fevers and pretty severe fatigue. It's hard to grow in the blood and most people don't need treatment unless they are severely immunosuppressed.
So, either this is a false positive PPD from being misread (agree with Paradox!), a false positive from exposure to other kinds of mycobacterium other than TB, or a true positive TB infection due to TB exposure. I think if your doctor thought this was true TB disease causing your granuloma you would be definitely be treated with at least 3 drugs. If you/he really needed to have a diagnosis he would be recommending a liver biopsy. The easiest thing to do is to take the 9 months of INH so that if it is the latter you will be protected from TB disease.

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My liver doctor doesnt want to do a liver biopsy unless he is treating the disease. He says that sarcoidosis of the liver doesnt require treatment unless it is extreme or causing liver problems. My liver test all came back within normal range except for my enzymes were up a little. They are sending me to an infectious disease doctor to go over more of my symptoms. I sort of want a liver biopsy so I can have a firm diagnosis of Sarcoidosis. The doctors at the Mayo act like they are scared to do anything or they just dont care. Next week I have an appointment with pulmonary and we will see what happens.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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