Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, September 17, 2014

The latest on my prostatitis

I wrote in my last post that the doctor switched me from Bactrim to Levaquin when the second course of Bactrim failed to bring the prostatitis under control.  I was prescribed a 10 day course of Levaquin.

On about the 8th day of the Levaquin treatment, my symptoms were still mostly unchanged.  I called the doctor again and he switched me to yet a third antibiotic: generic Omnicef (cefdinir).  Again, he prescribed a 10 day course.

By about the second day of Omnicef treatment, I began to feel some relief.  I'm about mid-day through the treatment now and I feel mostly normal "down there" -- maybe 95% of normal.  But, at this stage, I can tell that some symptoms are still hanging around at a low level.  I have the vague sense that if I stopped the antibiotics right now, the symptoms would come right back.

I am starting to realize based on my internet research and conversations with other patients that prostatitis can be very tricky and hard to kill.  Sometimes it takes a month or two of antibiotics.

The good news is that, if you don't count the prostatitis, my overall health continues to be fairly good, as it was throughout the summer.  My baseline health continues to rise at an almost imperceptibly slow rate.  If it simply topped off right now and never got any better, I would probably count my blessings.  My bigger concern would be relapse, so I am generally continuing with the pacing, supplements, and diet that (I think) got me here in the first place.

Tuesday, September 2, 2014

Update on my prostatitis

A lot has happened since I last wrote about this in mid-August.  My baseline health has actually been pretty good lately (for an ME patient), but this prostatitis has been preventing me from getting the full enjoyment out of it.

A few day after my last post, I made an appointment with my urologist.  As predicted, he wanted me to immediately go on antibiotics.  I argued.  I said that I'd read 90% of prostatitis cases are non-bacterial. He rolled his eyes and chuckled (not in a condescending way - we have a good relationship).  He said that while it's true that not all cases of prostatitis are bacterial, it's a lot more than 10%.  Based on the fact that antibiotics seemed to cure me last time (arguably) he recommended them again.  I protested.

The doctor's said, "let's compromise.  I'll write you a 'script and you hold onto it and only redeem it if you get worse."  I agreed this was a reasonable plan.  Then we agreed on a specific antibiotic: Bactrim.  Doxycycline didn't work for me last November and Cipro is apparently the devil (according to others) and I don't want to risk tendon damage.

My plan was to wait a week and see where I was after doing "all the right things" according to the urologist: no caffeine (I rarely have it anyway), hot baths, and anti-inflammatories.

I lasted two days.

It turned out to be the right call because 3 or 4 days after I started the Bactrim, I felt almost 100% better overnight.  If it was just the anti-inflammatory affects of the Bactrim (as opposed to the bacteria-killing effects) I would have expected the improvement to be gradual and linear.  Instead, it was PAIN, PAIN, PAIN...nothing.

So I dutifully took the Bactrim 2x/day for the full 10 days (also with probiotics twice a day, of course). After the 10th day I felt good...for a few days.  Then it came right back.

I went back to the urologist and he prescribed two more weeks of Bactrim.  I started back on them after a 3 or 4 day break, which gave me some concern.  Wouldn't the strongest bacteria have survived and replicated, I asked?  The urologist waived off this concern without explanation.

Once back on the Bactrim, my symptoms mostly disappeared for a couple more days before coming roaring back.  So now I'm still on the Bactrim and the symptoms are back.  By the way, when I say "symptoms" I'm referring to the fact that when I sit down I get the slight sensation that I've been impaled on a wrought iron spike.

So this time I called my doctor back (I don't need another $45 co-pay, thanks), and he switched me to Levaquin - which is in the same scary family of antibiotics as Cipro, called fluoroquinolones.  The problem (according to Dr. Google) is that the prostate is a very isolated organ that is not easily reached by many antibiotics. The antibiotics in the fluoroquinolones family have a unique ability to penetrate tissue and get places that other antibiotics cannot.  That's also what makes them so toxic.

*Sigh*.  So it all comes down to this once again: live with pain and risk a spreading infection or take a fairly toxic antibiotic and decimate my gut flora.  Not an easy choice but I'm going to take my chances with the Levaquin.