I Need to Tell You Now That You Must Stay on Antibiotics the Rest of Your Life

I saw Dr C, the Infectious Disease doc, on Friday (the 19th). My first round results from the biopsy came in - but Dr. K, the fancy dermatologist in Miami, didn't bother telling either of us the results had arrived.

So Dr. C called him on the phone. She got the results faxed to her, but Dr. K had already left for the day, so she couldn't find out anything else. I excerpted the gist of the pathologist's report below.

Here's what we know so far: The lingering infection in my right arm's lymphatic system is not MRSA.

Instead, the results are: *probably...granulomatous dermatitis of infectious cause.* Meaning, we don't know much of anything for sure. Not yet.

That's pretty much identical to the previous attempt at testing and culturing the right arm mystery lumps a year ago. Except now, of course, it's in my lymph vessels and lymph nodes, which is more serious.

*Granulomatous* means it looks, once again, like it's probably an infection, and probably mycobacteria. The mycobacteria family means, for example, that it could be leprosy. Or, it could be fungal instead of any mycobacteria at all.

Usually, though, what all this spells is tuberculosis.

We think of TB as a lung thing, the deadly *consumption* of days gone by; but you can get TB in your skin, too. Your joints. Actually, it can infect a person just about anywhere it wants to.

And google tells me that the next most common site, after the lungs, is the lymphatic system.

So Dr. C and I had a long talk. She swung into action with a focus and drive that made me think of doing hurricane preps - how you get a certain tunnel vision, and no matter how tired you are everything falls away from you until the job is done.

I told her: --From the beginning you thought this one wasn't MRSA. I wasn't sure. I thought it was, but didn't feel certain until Dr. K said so. And he was wrong and you were right.

--So, where do we go from here?

She said: --I'm going to have some blood drawn now. Some will be for blood cultures. Also, I want a head-to-toe CAT scan. Then I want to see you again in two weeks.

--I need to tell you now that you must stay on antibiotics the rest of your life, especially in light of the prednisone. Last year, during the eight months on the minocycline, you did better than I've ever seen you. Since that stopped you've had one serious infection after another.

--So now we'll put you on monthly supplies of antibiotics. We'll continue the minocycline and add...How about Cipro? Are you allergic to that? --No, and I've taken it before. --Good. We'll add on the Cipro too then, and see what happens.

So.

I showed her my right hand, where the rheumatoid arthritis (and/or mycobacteria?) is eating my first two fingers. Dr. C is also quite knowledgeable about allergies; she understands cases like mine, where the physical impact of having thousands of extreme allergies is absolutely debilitating. I told her: --I can't decrease the prednisone dose any more. It's not possible for me to function at a lower dose.

She knows I'm not just saying that. She's never tried to push me off it like my RA doc does. I appreciate that. He has some personal thing with steroids, some paranoia. Some docs do, just like with pain meds. (Unfortunately, in my experience, that usually means they do far LESS to mitigate the side effects of the meds in question.) Interestingly, he's also said before that he thinks some of the arthritis is from infection, rather than RA - especially the joints in those two fingers.

I did the CAT scan yesterday, Monday. While I don't know for sure, I think she may be checking to see if I have TB in my organs.

Do I want to be on antibiotics the rest of my life? Of course not.

But that's better than letting these infections keep eating me alive, piece by piece.

Just before I left her office I told her: --Thank you for being my doctor, for taking such good care of me.

~~~~~~~~~~~~~~~

The initial analysis of the biopsy was conducted by a board certified dermatopathologist. Here's how the report reads:

"SOURCE UNSPECIFIED

"Perivascular and partially periadnexal predominantly lymphohistiocytic infiltrate with rare giant cells.

"Note: Although special stains including acid fast bacteria and GMS show negative results, histopathologic findings most probably represent granulomatous dermatitis of infectious cause. Correlation with tissue cultures is suggested."

and,

"A portion of the tissue is forwarded to Nichols Institute for AFB culture."

The lab who will be culturing it, the Nichols Institute, has an excellent reputation for solving hard questions like this - it's a lab of last resort. We'll see what they can do this time.