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

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

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.

5 comments:

  1. Thank you so much for sharing your story. I wish you the very best going through this!

    Hang in there..

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    1. Thank you for reading, and for your support :)

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  2. I was on Cort's site and saw a link to your blog posted by Christine, a patient of Dr. Chia's. I came down with Chronic Fatigue Syndrome after a bad virus (8th grade) and prolonged viral symptoms, then FM, and seemingly secondary Raynaud's. I was very ill from 14-16 and then went on to work my way up to pass HS a year early w/out attending, attending a JC w/ a small class load and working my way up w/ more classes, then that and work, then more work & communting 45 min 3xs a wk also to finish up classes for transfer, then no work but off to a university and after a few mos sore throats started, FM pain like never before and sneaky ME/CFS symptoms and what seemed like re-onset. So, the first time I dealt with this I was a precocious teen and my parents helped me get places where I thought answers could be found...Dr's agreed something was wrong but not what until an Infectious Disease Dr, Dr. David Fisk at Sansum said he's seen his patients have a bad virus and be pretty debilitated for about 2 years and then with gradual exercise they get better...idk if he even gave it a name. But, I had unexplained pain and kyphosis, so off to Stanford pediatric rheumatology and orthopedics. My rheumatologist was FANTASTIC, so sweet, told me I had/have FM but basically just told me symptoms I had were one's she'd seen before and "normal"...that was great so I knew it wasn't something leading to death...since for over a yr what was ailing me and making me so ill made it so I needed help making it to the car. But, she had me try a regular Naproxen dose which didn't help much and kind of whispered to check AZ or NV for a CFS center...I don't think Stanford's was running then? '08-'09. She said I was one of the worst pediatric cases they had but I was at least 25% better my dad and I figured by the time she saw me. Then I continued to improve so didn't go elsewhere (expensive to go out of state of course) except a referral for a local Neurologist who was affiliated w/ Stanford. I had to withdraw from this sem at school w/ a fantastic semester planned and amazing friends and club involvement, but I've been researching my brains out (discovering Dr. Chia, of course Dr. Montoya/Stanford's CFS/MS program, Dr. Klimas, Dr. Peterson, recent research, immune and viral info etc etc) w/ hopes of myself getting better (I am determined! I've gotten better before!) and then helping others w/ my knowledge and being an advocate.

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  3. **All that said (wow...I haven't explained my history in a while!) to say my dad who also has CFS and has EBV flares for 22+ yrs recently ended up with prostatitis! He has been on Levaquin for about a month (28 days is recommended treatment I think he said) and has figured out how to cope w/ many symptoms though the dizziness has been bothering him and maybe some anxiety from it. He must avoid hot/spicy foods or major burning and discomfort. He felt about 98% a few days ago then started getting discomfort and is wondering if has yeast infection. He ended up at a PA (I've pretty much only had bad experiences w/ them) and they kept saying bladder infection, then another PA b/c his Internist that does hospital rotations no-showed so PA was there instead....long story short he spent a wk laying around feeling bad before losing his appetite and ending up in the hosp b/c of it...he diagnosed himself correctly b/c HE knows his body better than they do. 3 days IV antibiotics followed by oral Levaquin and by the 5th or 6th day I think is when some real improvement came but he's had a little bit of ups and downs. The PA for the Internist (since the Dr. no-showed for his follow-up) added Flomax (I think made from Saw Palmetto?) b/c said usually it's prescribed w/ Levaquin to help shrink prostate or help inflammation (though his PSA numbers are super good...even better than a cpl yrs ago). Well, I had heard not to take Saw Palmetto/Flomax w/ BP meds and warned him...but he took it thinking the PA must have checked his chart for current meds and w/ wanting to have best possible prostatitis outcome. WELL, it made him feel dizzy and horrible. The public health major here was right. Interaction. He felt much better off it. He surprisingly had to have triple bypass open heart surgery in '12 (he is not overweight and has been physically active in his career forever but LDL pattern B...father and uncle died of enlarged hearts/heart attack but passed off as just result of rheumatic fever solely) and is on minimal meds and does lots good nutrition & supplements Dr. Sinatra recommends. ***He researches a bunch since he won't find out how to have better health otherwise and he was nervous when his prostatitis symptoms weren't totally gone and only a few days of antibiotic left. He found a study on a few cloves of fresh GARLIC in combo w/ Levaquin increased people's recovery by a good percentage. You can Google it and I can probably get you the link. Not sure if the spicy quality of garlic could add initial irritation...I think it did for my dad when he went overboard when started it. Hope that helps and if my dad can be of help in your experience I'm sure he wouldn't mind sharing knowledge. I will check out your blog! Just saw this post first thing.

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    1. Hi Jane, I cannot thank you enough for all of that information. I have been meaning to do another update. This Prostatitis thing is apparently really tricky and *really hard to get rid of...

      I am glad you found my blog. Hope to hear from you again in the future...

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