Update on my ReA

[Guest guest]

I haven't posted in months, but I always check the group mail. I contracted an

STD a little over a year ago, and began my experience with ReA in December 06. I

have always had as much or more pain and suffering from the prostatitis and

urethritis than the arthritis, strictly speaking, but my buttock, knee, tendon,

and entheses pains have been pretty bad, nonetheless.

I began treatment with three weeks of doxy and indefinite naproxen. I have seen

my GP, several urologists, an ID specialist, and a rheumy. I currently take

naproxen and tramadol.

I had a brief remission in May of last year, but everything came back over the

summer. Then, I had the best remission of all beginning in August which lasted

until November. But beginning again in November, the uro symptoms came back with

a vengeance, followed by the leg, knee, buttock, and even intestinal pains. When

I am in a flare, it's as if everything that could be covered by a pair of boxers

is inflamed, painful, and irritated, plus the knees.

My rheumy suggested I drop the naproxen (only 400 mg per day) and see what

happened. This was in August, and coincided with that wonderful remission. I

even quit tramadol, and thought finally I might be coming out of all this for

good. Of course, it didn't happen that way. My flare beginning in November was

so bad (including the return of epididymitis for the first time since the

initial episode) that I went to see a urologist again. He suggested I try a

regimen of Levaquin, in case it was bacterial prostatitis that had never quite

been cleared. He gave me the choice of 500 mg per day for a month, or 750 per

day for two weeks. I have always been made to feel bad by antibiotics, and the

doxy last winter almost did me in (though in retrospect I am beginning to think

it simply coincided with the beginning of the ReA), so I chose 750 for 2 weeks.

Right away, I noticed that the antibiotic, whatever else it might do, was not

making me feel bad in itself. So I called the uro and

suggested I take the 750 for 3 weeks, which I had noticed was a regimen begin

studied in current trials for prostatitis. He agreed (and fortunately, so did my

insurance, since the pills are $15 apiece retail). I can't say they helped any.

I finished the 3 weeks trial about Christmas. I can't say it hurt anything, or

helped anything.

Anyway, beginning about 2 weeks ago, I noticed my flare was finally beginning to

subside a little. Who knows if I am going into another remission. I sure hope

so.

By the way, for those of you who have been discussing neuropathy: I spent much

of last year, while seeing various doctors, trying to explain my pains. I used

the term " like neuropathy " a lot. The pains in my penis, rectum, prostate,

buttocks, etc., always seemed sort of like a neuropathy, in that they could

seemingly come and go, remit and flare, sometimes over a period of only hours or

days. In curiosity, I tried one of my mother's (she has diabetic neuropathy) 100

mg Lyrica. Lyrica is a second generation gabapentin (first gen was Neurontin).

It worked very well! It made me sleepy, so I took it only at night, and got a

50 mg Rx from my own doctor, but it definitely helped my ReA pains and

inflammation in the " boxer shorts " area. A serious drawback for me was that it

tended to constipate me significantly. Anyway, I thought I'd mention my luck

with it. It is patented and expensive, but neurontin is generic and almost the

same thing.

Roy

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[Guest guest]

Roy:

Sounds like we're living the same nightmare. Can you tell me which STD should

up in your labs?

Thanks,

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[Guest guest]

Sounds like we're living the same nightmare. Can you tell me which STD should

up in your labs?

Thanks,

Actually, I'm the guy who had NO STD show up, per se. After thinking, for about

2 months or so, that it was a bad outbreak of an old (1970's) herpetic

infection, and taking Valtrex until it was running out of my nose, I (not my

doctor) did some online research and realized that all my symptoms, including

incipient ReA, pointed to chlamydia. I very foolishly took some old antibiotic I

had, but quickly realized what a mistake that was, and went to the doctor. He

agreed that the antibiotic could mask a standard swab test, etc., so we opted

for a serum test for chlamydia antibodies. The infectious disease specialist I

later saw scoffed at this, and said basically everyone will have some chlamydia

antibodies. Nonetheless, mine were significantly elevated, and anyway the GP

began me on doxycycline even before the antibodies test was back. By the time I

say the ID specialist, and had a real swab test and every other test known to

science, everything came back negative (as well it

should, after more than three weeks of doxycycline). So, sad to say, I have

never actually tested postive for a current chlamydia infection, but that is the

infection that my and my doctors are fairly certain I had. I have certainly had

a first-class case of the kind of ReA that follows a chlamydia infection when it

goes too long before it is treated.

Roy__________________________________________________________

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[Guest guest]

serum test for chlamydia antibodies

Roy, What were the results? Igg? Iga? Igm?

Dan in WI

[Guest guest]

adgp9 <electrician01@...> wrote: serum

test for chlamydia antibodies

Roy, What were the results? Igg? Iga? Igm?

Dan in WI

I honestly don't know. The nurse called me on the phone and told me that the

" normal " range was under 1.0 of whatever was being reported (she said 0.0 to

0.99). My number was 2.7

The results are probably in my chart. Next time I go to my GP, I'll ask about

those results out of curiosity.

Roy

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