Medical Updates and Diagnosis

Hello Everyone-

(Note: This is longer than I initially intended. If you don’t want to
read the whole thing, it basically says that the eye issue was caused
by an infection, and it isn’t sarcoid. And also that I’m still alive.)

In case you didn’t already know, the surgery went well
and I’m healing up nicely after a two-day stay at the hospital. I
finished finals on Wednesday, and it looks like I’ll survive this
quarter despite basically missing 20% of it at the end. Right now I’m
at about 70% or so of “normal,” as far as I can guess.

This might be a little complicated to explain, because a lot of stuff
was going on at once, but I’ll try my best. The biopsy didn’t show
the “smoking gun” for sarcoid, and actually didn’t initially show
anything useful at first. The neuro ophthalmologist was eager to begin
methylprednisone (anti-inflammation steroids) treatment as soon as
possible, and a side-effect of the steroids would make me more
susceptible to infection. So he decided to have the pathologist take a
closer look and spotted what might be signs of infection after all in
the lung samples. They ran a large battery of tests looking for all
sorts of common diseases like TB and just about anything else–9 vials
of blood, to be exactly. Everything seemed to rule against an
infection, so we made the decision to go with the steroids, because at
this point sarcoid was still the leading contender for the root cause.

However, soon after starting steroids (as a matter of fact, it was a
few hours after the initial infusion), an optical exam revealed some
changes that were not completely characteristic of sarcoid. This made
them suspicious enough to order some tests looking for the bacterium
Bartonella, which is what the optical inflammation looked like at that
point.

The steroids, despite large doses, were not removing the inflammation
as they would if the optical nerve issue was sarcoid-based. Then on
Tuesday the antibody tests came up highly positive (detection at
1:1024 dialiation) for Bartonella. This means that the optical nerve
swelling actually was/is of an infectious origin after all. On
Thursday I went to an appointment and was taken off the steroids and
put on a 2-week antibiotic regimen. The primary doctor said that we
should start seeing improvement in anywhere from a few weeks to a few
months, and that he expects vision to improve greatly in the eye. He
wasn’t sure it would go back to 20/20, however, due to the very high
amount of initial inflammation.

So why was Bartonella–an infectious process–found so late in the
game? There are a number of reasons. One is the highly atypical
response I had, both the optic nerve swelling itself, and the sheer
size of it. It didn’t exhibit normal characteristics of an infection
such as pain, swelling (in other areas of the eye), redness, etc.
Secondly, the lack of tumor or any cancerous process (such as Leukemia)
led them to believe a more subtle process such as sarcoid could be at
work. Thirdly, the calcification and granulamoas in the left lung were,
while not seen all the time in sarcoid, fairly good evidence to make
sarcoid the leading possibility. And finally, as I noted previously,
this was a very abnormal reaction to the bacteria and I’m not sure the
doctors had seen it before to such a magnitude. The characteristic
“signs” of a Bartonella infection in the eye only showed up very
recently after the huge amount of initial swelling dissipated.

They still aren’t sure about the slightly decreased lung function and
the abnormalities there. They’ve done all sorts of tests on the samples
so far, and we’re waiting on a DNA-match test for Bartonella for that,
since the process can also produce (in again, very rare situations)
some lung signs. But nobody is really sure, and some possible
differential diagnoses can also be previous exposure to pneumonia (or
another infectious process) that the lung has isolated and was
fighting, or some toxic gas inhalation in the past. But right now we’re
waiting for the antibiotic course to see how it reacts.