Saw the Rheumy again today

[Terry]

Well, once again my blood work and urinalysis came back negative, but based on the symptoms I've had and the fact that many of them react only to Prednisone, the Rheumy wants to go forward with the biopsy. I was hoping to get the biopsy out of the way last week, but the ENT who's going to do it wanted to talk to the Rheumy about it first. The Rheumy also wants him to do a culture while he's at it. The Rheumy says "something is definitely going on". We need to find out what that something is and do whatever we can about it. In order to keep the inflammation in my sinuses in check, the Rheumy gave me a shot of slow-release cortisone. So forward we go, and the biopsy is on the 17th. Then it's back to the Rheumy to talk about the results.

[Jack]

Was the possibility of Wegener's discussed? What did he think?

[Terry]

Oh yes, I was sent to him by the ENT to hopefully get a final diagnosis. He won't put me on Cytoxan until he confirms it, but he sure has thrown a lot of Prednisone my way. He didn't do that this time, but gave me a shot of slow-release cortisone. Hopefully, this will keep my nose from swelling shut on me in the meantime. On the other hand, the Prednisone was stopping my nose from breaking out. All year, I've been getting red blistery breakouts on my nose. Looks like a new batch is starting up today. I call it my dalmatian nose because it gets all spotted.

[Jack]

Any news Terry?

[andrew]

I was just thinking the same thing

[Terry]

Hey Jack! The biopsy came back negative. That's not especially good news for me, as there has to be an explanation for all these symptoms. After the first of the year, I will return to my PCP and we will continue to look for answers.

[Sangye]

Hi Terry,
What a trial for you. I'm so sorry it's not more straightforward. I saw on another post of yours somewhere that you have several other autoimmune diseases. Have the doctors explained that some can cause false negatives (or positives) on tests? Not on every test, but tests like ANCA, ANA, that measure antibodies.

I also saw that you have fibromyalgia. Contrary to what medical docs will tell you, that isn't a permanent condition. It's easily correctable, actually. (I used to treat a lot of patients with it when I was able to work as a chiropractor.) You need to clean up the diet (no sugar, limit or avoid white flour) and give your gut a proper balance of good flora. Get a quality brand of probiotics and take them on an empty stomach, several times a day. I bet you'll see a difference within 2 weeks. If not, you may need more assistance to get things balanced, but it's still VERY doable and will make your life so much better.

My mom had severe fibromyalgia for 10 years. Had to take aspirin every morning just to be able to put her shoes and socks on. When she finally took my advice (who wants to give up sugar?), she became stronger than she'd ever been in her life. Able to dance for many hours every day, walk, exercise, anything. I saw this repeated so many times with patients.

At any rate, it's not going to hurt you to try it, and can only improve your general health. Good luck.

[Terry]

Sangye, yes I have heard about false negatives. A friend of mine online is married to a guy who has an autoimmune disease I can't remember the name of. It took repetitive blood tests and three biopsies before he got a diagnosis.

Thirty years ago, I had a severe case of Coccidiomycosis (Valley Fever), and although I was very sick with it, I never tested positive for it. They finally go to the point where they just treated me for it because all the symptoms were there. If it walks like a duck and quacks like a duck, it's a duck!

I will not give up my quest. I need to find out what's been going on, and I will do that or die trying!