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I hope someone can help me here, I am desperate and no where to go.
About two years ago I came down with some sort of urinary infection. I was tested for chlamydiae & Gonorrhea (GC) before going on any medicine. Results, negative.
4 weeks post exposure – started getting joint pain, prostatitis, mouth sore, burning eye, and ill feeling.
Went to Infectious disease physician – he said this sounds like ReA. Reactive arthritis and it will go away. I wish he was right.
Doc, decided to run testing for GC, Urine culture, HIV 1/2, EBV, CMV, RPR, CBC, ESR, CRP, CK, ANA, Rheumatoid Panel, and some infectious stuff.
I was tested for Chlamydia & Gonorrhea of Urine using NAA DNA test. And C. trachomatis, C.pneumoniae or C. psittaci using IGG / IGM. Results: Negative. No post exposure ever detected. Nothing.
Results – Negative.
My blood was spanking clean except high CK Total level. This is 8 weeks post exposure.
Doc decided to give me Doxy 100mg for 30 days, Z-Pack for 30 days, and Cipro 30 days. I took all those throughout 5 month period.
Joint pain continue and eventually started causing Spine pain and stiffness along with neck pain.
One year exactly, I ask my doc about Flagyl. He prescribe and I took it. WOW, Flagyl instantly gave me pain relief and decrease in symptoms. My physician thought it must be anti-inflammatory effect.
I said what the hell it helps so I keep taking it on and off. Ok so at this point i’m able to control my pain.
However, (present day 1 year and half) post exposure – I decided to see rheumatology who decided to do X-Ray and MRI of SI Joint. Results: Negative, no inflammation seen.
rheumatology is confuse and says I should take prednisone -> Sulfasalsaine -> TNF Blocker.
I kindly told doc, FLAGYL helps. rheumatology says impossible and no such thing.
Here i am today, all my blood work is negative except high CK level (600). rheumatology is asking I get EMG test done next week to rule out muscle disease which he thinks has nothing to do with arthritis pain. Two different issues.
Over last two years I’ve seen 5 Urologist, Rheumatology, 1 ID doc. None of these guys are able to pin point or cause of triggering bacteria.
Urologist has done prostate secretion for anaerobic and aerobic culture along with urine culture. Results: Negative. No growth.
Flagyl is only antibiotics that helps with all my symptoms but they come right back if I stop FLAGYL even for a day. So I decided to take PREDNISONE to see if it helps.
Could anyone here help me out? How did this immune process start? Is there an active infection? Is this disease like an on switch type?
I am confuse and I am not sure which doctor to see because none of them are helpful.
I don’t mind taking Flagyl for ever / Doxcy.
My ID doc is thinking of trying bacterim ds, he says ReA / AS can be cause by klebsilla bacteria.
MY ESR AND CRP has always being normal and no bacteria was ever found in my urine.
As of writing, I still have symptoms of prostatitis, joint pain, eye pain, ankle, knee, hip, spine stiffness and extreme fatigue.
I'm currently taking Doxy and Flagyl along with Duexis just to see if AB makes difference. I plan on taking doxy for 3 months before moving on to Bactrim. Levo / cipro i'm allergic to.
What should I do?
P.S. Prednisone - does not work it makes joint pain worse.
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