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Lung & Respiratory Disorders / COPD Message Board


Lung & Respiratory Disorders / COPD Board Index


I have 5mm- 12 mm nodules in both lower lobes of my lungs. Had several CT scans and finally a PET scan. It showed no hypermetabolic activity to suggest cancer, so great. But, it did say that findings suggest these are related to remote granulomatous disease, and suggest a repeat CT in 3 months. So, I looked it up but there is very little info on it. Waiting to talk to the doctor, but thought I'd ask you all if you knew what that would mean. Valley fever? TB? sarcoidosis? Interstitial lung disease? I have Lupus and Fibromyalgia.
Thanks,
[QUOTE=Sunsetnan;4631941]My test for Valley Fever was positive for AB IgG (EIA) and IGM (ID), but negative for IgG (ID). The comp fixation was *** (which I would think means 3+) and the interpretation was *. My doctor said something about it being borderline and wants the test repeated again in 3 weeks. Probably testing for a false positive or to check the course of the disease. The ACE test (for sarcoidosis) was on the high normal side. So, I guess this is still a wait and see thing. Thought I'd give you an update.
Best Regards,[/QUOTE]

Hi,

Sorry for the late response as I just found your posts. I have CVID and suddenly became ill in June. We had been watching multiple nodes on my lungs for a year at this point doing ct's every 3 months. In June though, the CT blew up with nodes "too numerous to count". Pulmo freaked, biopsy asap, no cancer, showed granulomas. They treated me for Valley Fever even tho tests were negative (I may not be able to test positive to antibody tests because of my immune disease) and no spores were found in biopsy. Went back to work in August and now am out again. They THINK I have GLILD - Granulomatous Lymphocytic Interstitial Lung Disease. I am waiting to go to National Jewish Hospital in Colorado for diagnosis and treatment plan.

What else I find interesting is I have all the symptoms of lupus (cannot test positive to antibody tests) and they have dx me with fibro as well (which i think is lupus lol). My only symptoms at the time I got sick in june was low grade fever and extreme fatigue, like I couldn't even load the dishwasher. I too can not find anything about this disease, its so rare.
I noticed that you are from my old stomping grounds. I grew up and lived in that area for many years. In fact, I still go to see my doctor there. I contacted my doctor to clarify, and he is repeating to check for a false positive. The results will be sent to the health department. My niece who is an NP said that in her practice, any positive result is sent to the HD.

I'm sorry to hear of your problems. I was curious as to the biopsy. I think that if the CT shows more and bigger, then that will be the next step. Can you describe the procedure and your tolerance?

I was once thought to have ILD when I was pregnant with my youngest, who is now a teenager. But, because I was pregnant, they couldn't do any radiological tests until later in the pregnancy. By then, I had pretty much improved.

I know that a lot of lung problems have very little if no symptoms. What made them think to order imaging studies for your lungs? Mine was caught my accident. My endocrinologist said that he didn't like to do CT scans because then you find these little things and then you are obligated to have to do more radiological studies just to rule out problems. But, what if... you do find something that turns out to be significant and the cause of your problems, right?

What medication are you taking for the Valley Fever suspicion? Diflucan? I was told that it can cause nausea and stomach upset. Are you having any of those symptoms?

Still waiting to get tested and scanned. No new symptoms.
Best Regards,
[QUOTE=Sunsetnan;4636471]I noticed that you are from my old stomping grounds. I grew up and lived in that area for many years. In fact, I still go to see my doctor there. I contacted my doctor to clarify, and he is repeating to check for a false positive. The results will be sent to the health department. My niece who is an NP said that in her practice, any positive result is sent to the HD.

I'm sorry to hear of your problems. I was curious as to the biopsy. I think that if the CT shows more and bigger, then that will be the next step. Can you describe the procedure and your tolerance?

I was once thought to have ILD when I was pregnant with my youngest, who is now a teenager. But, because I was pregnant, they couldn't do any radiological tests until later in the pregnancy. By then, I had pretty much improved.

I know that a lot of lung problems have very little if no symptoms. What made them think to order imaging studies for your lungs? Mine was caught my accident. My endocrinologist said that he didn't like to do CT scans because then you find these little things and then you are obligated to have to do more radiological studies just to rule out problems. But, what if... you do find something that turns out to be significant and the cause of your problems, right?

What medication are you taking for the Valley Fever suspicion? Diflucan? I was told that it can cause nausea and stomach upset. Are you having any of those symptoms?

Still waiting to get tested and scanned. No new symptoms.
Best Regards,[/QUOTE]

Hi - I wonder if we saw the same doc? I WAS seeing an infectious disease specialist who treated my immune disease so naturally he treated what they thought was Valley Fever.

Let me back up. When I was dx with Common Variable Immunodeficiency - they automatically do a chest ct to check for damage - usually bronchectasis (spelling is wrong). I didn't have it but several nodes were found. We watched them via ct scan every 3 months. Then they exploded, scan said some grew and new ones grew, numbers were "too numerous to count". A biopsy within a week. Fine needle biopsy while I was awake. Laid on my stomach, they stuck a needle in my back in several places - no pain. Coughed up some blood right after, very easy procedure. For immunodeficient people, things like this are scary, kind of risky but I did good. NO VF spores were found. Lymphocytes were found, granulomas. They kept treating me for VF - up to 800mgs of Diflucan. Then the specialist started saying he didn't think it was VF and it was the granulomas in my lungs. Pulmo wouldn't listen. Finally I went back to work and took myself off the meds. I was down to 400mgs when my hairloss started. I mean CLUMPS in the shower everyday. Got off the meds about 3 months ago, hair still falling out, random swelling in feet, Reynauds, rash on my arm, livedo retiuclaris, all kinds of weird symtpoms. Anyways all docs agreed it was NOT from the Diflucan, been off it too long. Saw a new immuno in LA for a lung consult. He said he thinks I have GLILD - that was in Sept. It's a form, like a sister of ILD. Very rare. Can't find anything about it on the internet. One article only. I have an appointment in Colorado in Jan at National Jewish.

I personally had no problems on the Diflucan. First 400mgs then ended with 800mg. Still no side effects at that level. The only symptoms I had was low fever and extreme fatigue.

Did they discuss BOOP with you? Also causes granulomas. Are you typically sick? Well? And you said they are not calcified right? That would indicate past infection.





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