A Patient's Cautionary Tale
This factual story shows how men will stick to the idea that they have an infection through thick and thin, to the detriment of their health in many cases
Author: Tim M.
Hi to all,
Here is a story for you. My most serious pain which is constant in my urethra with testicle pain which is only calmed by neurontin and vicodin. Does anyone else suffer severe intractable pain in the urethra?
While working in South America-Venezuela as a drilling fluid engineer...
July 30 1997: Arrive in Venezuela. I am a drilling fluid engineer, we are using 100% diesel and various chemical additives to maintain a good drilling program in the Caripita shale that is being drilled, bottom hole temperature is around 200 degrees F. Flowline temperature is 150-180 degrees F. A steam of those chemicals are breathed continuously as drilling fluid pits are monitored at all times.
August 4 1997: Severe cramping in my stomach which turned to dysentery. Other oilfield workers gave me an antibiotic Erythromycin which helped but continued with severe diarrhea even as I returned home some 4 weeks later.
August 28 1997: Return home from Venezuela.
September 2 1997: Dr. W. my family doctor stated he thought I had a case of Giardia a parasite infection (no test done) and prescribed Flagyl 500mg. 2x a day for 9 days. I also have ulcerations at the back of my throat which are sore and was diagnosed as probably a result of my living environment in Venezuela.
September 29 1997: I arrive in Venezuela.
October 13 1997: Severe urethritis with a clear mucid discharge later that burns in my urethra.
October 14 1997: Rural pharmacy in Venezuela gives me a injection of Tobramycin, I still had clear discharge and severe burning in my urethra.
October 15 1997: Rural pharmacy in Venezuela gives me another injection of Tobramycin my symptoms have not changed.
October 16 1997: Go to Maturin, VZ. Dr gives me Azithromicin 500mg. 1 per day for 6 days with 100mg. doxycycline 3x per day for 7 days. I have clear mucid discharge with severe burning in urethra more so after urinating or ejaculation. I am having night sweats,cramping muscles and chills, feels like a flu illness.
October 23 1997: I return home from Venezuela.
October 24 1997: Go to Dr. W. who states that I have urethritis and prescribes Ciprofloxacin 1000mg. per day for 3 days.
October 27 1997: Go to Dr. Dk. a urologist . He tests mucid discharge for Chlamydia & Goc. which later comes back negative. He states I have urethritis and prescribes Erythromycin Stearate 500mg. 4x per day for 14 days. Severe burning in urethra and clear mucid discharge. Urologist states he cannot see any sign of bacteria or trichomonas. Severe pain in urinary tract.
November 17 1997: Go to Dr. W. and he prescribes 30 days of 100mg. doxycycline 2x per day. My symptoms have lessened somewhat, still have burning pain in urethra and clear discharge.
November 18 1997: I arrive in Venezuela.
November 20 1998: Heat and side effects of doxycycline make blisters where I am exposed to sun and I stop taking doxycycline.
November 21 1997: While back at work in Venezuela pain goes from urethra to also severe pain in testicles,prostate and perineal area while I was pulling on a 500 bbl. tank valve. Pain is very severe. Cannot do job duties properly.
November 22 1997: Go to emergency room in Maturin, VZ. Dr. stated I had protein and mucous in my urine and wanted me to be admitted. IV of sodium chloride and Ibuprofen given. I stated I would fly back to USA to be treated. Severe pain in urinary tract.
November 24 1997: I return home from Venezuela and in severe pain in genitourinary tract.
November 25 1997: Go to emergency room at Norman, OK see a Dr. Y. I receive a injection of Demerol and prescribes Vicodin for pain and Ciprofloxacin 500mg. 2x a day for 8 days and then see urologist. Severe burning in urethra, testicles and prostate area, more debilitating pain after urinating and /or ejaculation. Urinalysis, chem. 25, and culture profile done. Results unknown to me.
December 2 1997: Go to Dr. Dk. in Norman, OK. He states that I have prostatitis. Expressed prostate secretions full of white blood cells >20 high power field. Prescribes 750mg. Ciprofloxacin 2x a day for 30 days and tells me to live with my pain and go back to work. Dr. Dk. is not interested in this case and I will never go back to him. Pain is debilitating.
December 23 1997: Go to urologist Dr. C. in Denton, TX. I now have 4-5 white blood cells in my expressed prostate secretions with no sign of trichomonas and no growth in cultures, Semen sample no growth. Prescribes 750mg. Ciprofloxacin 2x per day, 100mg. doxcycline 2x per day for 30 days on both along with 500mg. Flagyl 3x per day for 14 days. Debilitating pain continues in urinary tract. Vicodin, Daypro and valium for pain.
January 2 1998: Go to Dr. C. in Denton, Tx. Prostate massage done and culture on EPS which is negative. Prescribes Clindamycin 600mg. 3x per day for 30 days along with my other medications I am taking. Debilitating pain in urinary tract, fatigue and short term memory problems, eyes are very sensitive to light and back pain.
January 9 1998: Go to Denton, Tx. Prostate massage given. Debilitating pain in urinary tract, fatigue and short term memory problems, eyes are sensitive to light and in bright light see spots and back pain.
January 16 1998: go to Denton, Tx. Prostate massage given. Debilitating pain in urinary tract, fatigue and short term memory problems, and back pain.
January 20 1998: Dr. W. in Norman, OK prescribes Augmentin 500mg. 3x per day for 10 days along with my other medications. HIV test negative.
January 23 1998: Go to Denton, TX. Prostate massage given. Severe pain in urinary tract, fatigue and short term memory problems, photosensitivity and back pain.
January 29 1998: All medications stopped.
January 30 1998: Go to Denton, TX. Dr. C. states he will try IV antibiotics. Debilitating pain in perineal area. Vicodin and valium for pain.
February 2 1998: Start IV antibiotics Olsten Home Healthcare. IV Gentamycin 130mg. 3x per day for 14 days. IV Clindamycin 600mg. 3x per day for 14 days.
February 4 1998: Go to Denton, TX. Dr. C. does a Cystourethroscopy-negative findings. Debilitating pain in urinary tract, fatigue and short term memory problems. Prescribed Sporanox 100mg. 2x per day for 30 days. Vicodin and valium for pain.
February 15 1998: IV comes out. Moderate pain in urethra, testicles and prostate feeling some better.
February 27 1998: Go to Denton, TX. Dr. C. does digital rectum exam and states that my expressed prostate secretions has white blood cells 5-7 high power field. I ask if I can try to go back to work. Dr. states ok, but will continue treating me. Urinalysis negative. Prescribed 1000mg. Flagyl 3x per day for 5 days. Moderate pain in urethra, testicles and prostate.
March 3 1998: I arrive in Venezuela.
March 6 1998: Strenuous activities exacerbate my condition causing debilitating pain, severe burning in urethra, back of testicles and prostate area. I cannot do my job duties.
March 9 1998: I arrive home.
March 13 1998: Go to Denton, TX. Dr. C. Prescribes Diflucan 200mg. 2x per day for 30 days. Ibuprofen, Vicodin and valium for pain. Debilitating pain in urinary tract, fatigue, short term memory problems and dizzy spells. Clear mucid discharge.
March 19 1998: Go to Denton TX. Dr. C. discusses pelvic MRI and IVP Retrograde. Debilitating pain in urinary tract, fatigue and short term memory problems. Clear mucid discharge. Expressed prostate secretions show a negative coagulase staph infection susceptible only to vancomycin.
April 2 1998: Go to Denton Community Hospital for MRI and IVP Retrograde.
April 6 1998: Talk about MRI which was negative. IVP showed reflux back into ejaculatory ducts and cowpers gland according to Dr. C. Dr. C. prescribes IV Vancomycin for the staph infection.
April 7 1998: IV Vancomycin 1000mg. every 12 hours for 14 days. Olsten Home Healthcare.
April 21 1998: Stop taking IV medication.
May 7 1998: HIV test negative.
May 19 1998: Expressed prostate secretions showed no growth. Debilitating pain in urinary tract, fatigue, short term memory problems, ringing in ears at times, photosensitivity and dizzy spells. Vicodin and valium for pain.
May 28 1998: Go to Denton, TX. Dr. C. instills Rimso50/Unasyn into urinary tract. Burns severely in urethra.
June 1-4 1998: I put in catheter by Dr. C.'s instructions and instill Rimso50/Unasyn. Burned severely upon instillations and had to stop. Prescribed Elavil at bedtime 1- 25 mg. tablet.
June 11 1998: I am very depressed and debilitating pain in the prostate, urethra and testicle area is so bad that pain medication and hot baths help little. I have trouble with my short term memory and am fatigued much of the time, dizzy spells and ringing in ears at times. Any prolonged sitting or standing feels like the bottom is about to fall out and also feels like I am on fire between anus and scrotum. Quit taking Elavil .
June 18 1998: Go to Denton, Tx . Draw blood for viral test.
June 21 1998: White blood cells from expressed prostate excretions 30-40 high power field.
July 1 1998: Dr. M. at Center For Complex Infectious Diseases states I have a active, positive stealth viral infection (a variant CMV virus) which is causing my chronic intractable pain in my genitourinary tract as well as other symptoms I now have. The Assay showed the rapid development of a CPE consisting predominantly of foci of cells with vacuolated cytoplasmic changes. The positive CPE is interpreted as evidence of an active infection with a stealth virus. Dr. M. stated to me that a aggressive course of IV Ganciclovir may be of some benefit.
July 29 1998: Dr. C. prescribes Bactrim DS 2x per day for 12 weeks also 150mg. Diflucan 1x per week for 12 weeks. Debilitating pain in urinary tract, fatigue, short term memory problems, ringing in ears, photosensitivity and dizzy spells at times. Vicodin and valium for pain.
August 17 1998: Go to Dr. Cr. in Oklahoma City, OK. Talk of depression, fatigue, not sleeping well at night, short term memory loss, chronic debilitating pain, suicidal thoughts and a psychological examination. Suggested Elavil at bedtime.
August 24 1998: Go to Dr Cr. in Oklahoma City, OK. Dr Cr. states I have severe depression per psychological examination and evaluation due to chronic pain. Suggests to take Elavil at bedtime. Health symptoms have not changed.
August 31 1998: Go to Dr. Cr. to talk over depression and emotional thoughts. Debilitating pain in urinary tract, fatigue, short term memory problems, ringing in ears and dizzy spells at times. Vicodin and valium for pain.
September 1 1998: I am very depressed, frustrated because of chronic pain in the prostate, urethra and testicle area. Pain medication and hot baths help somewhat. I have trouble with my short term memory and am fatigued much of the time, dizzy spells, photosensitivity and ringing in ears at times. Any prolonged sitting, standing, walking feels like the bottom is about to fall out of my pelvic area and also feels like I am on fire between anus and scrotum.
September 9 1998: Dr. Cr. applies some relaxation techniques. I am very depressed and frustrated because of chronic pain in the prostate, urethra and testicle area. Pain medication and hot baths help somewhat. I have trouble with my short term memory and am fatigued much of the time, dizzy spells, photosensitivity and ringing in ears at times. Any prolonged sitting, standing, walking feels like the bottom is about to fall out of my pelvic area and also feels like I am on fire between anus and scrotum.
September 17 1998: Chronic pain in the prostate, urethra and testicle area due to viral infection, causes severe depression and frustration. Pain medication and hot baths help somewhat.
October 29 1998: Finished course of 12 weeks Bactrim and Diflucan. Health conditions have not improved any at all.
November 3 1998: Have correspondence with Dr. C. to let him know since antibiotic and anti-fungal medications stopped, severe pain has intensified in my 1. testicles 2. urethra 3. prostate area. Dr. C. starts me on Valtrex-valacyclovir 1000 mg. per day. Sporanox 100 mg. per day. OxyContin 20 mg. 2x per day for pain and vicodin as needed for break-thru pain.
November 6 1998: Stop Valtrex and sporanox and just keep taking pain relievers as I will be tested on 11-23-98 for viral, mycoplasma, ureaplasma and chlamydia infection by Immunoscience lab of California.
November 9 1998: I have severe burning pain in urethra, testicles and prostate area along with all other symptoms.
November 17/23 1998: I started having mouth ulcerations with severe sore throat along with my other symptoms. I go and see on 11-20-98 Dr. W. who prescribes Azithromycin for 5 days. I am holding off antibiotic as I am being tested for viral, mycoplasma, ureaplasma and chlamydia infections on 11/23/1998.
November 23/27 1998: Having severe pain from where Dr. C. took a urethral sample from and he prescribed 2% lidocaine to be put in urethra for instant pain relief of urethra. I have finished taking Azithromycin but still have sinus infection and hoarseness in throat.
December 8 1998: Sinus is better, all other problems the same as before (no relief). Chronic pain in the prostate, urethra and testicle area due to (viral infection ), causes severe depression and frustration. Pain medication and hot baths help somewhat. I have trouble with my short term memory and am fatigued much of the time, dizzy spells, photosensitivity and ringing in ears at times. Any prolonged sitting, standing, walking feels like the bottom is about to fall out of my pelvic area. Health conditions have not changed.
December 14 1998: Test results back from Immunosciences Lab -- blood, urine and urethral swab: mycoplasma(negative), ureaplasma(negative), EBV(negative), HSV6(negative), CMV(negative), HSV1(positive), HSV2(positive), Varicella Zoster(positive).
December 21 1998: Test for HLA- B27 antigen was negative.
December 28 1998: Taking valacyclovir 1000 mg. per day, oxycontin 20 mg. 1- tablet every 12 or 24 hours. Vicodin 7.5/500 mg. 1-2 tablets every 4-6 hours. Elavil as needed for sleep at bedtime 1-25 mg. tablet.
January 4 1999: Dr. Gr. an infectious doctor (Professor of Medicine Chief) states he thinks I have a herpetic neuralgia of genital tract due to viral infection and prescribes Neurontin 300mg. 1x per day for 3 days and then 300mg. 3x per day for 4 days also 500mg. valacyclovir every 12 hrs. to see if any improvement is seen in a 1 week period and then re-evaluate.
January 11 1999: Dr. Gr. increases neurontin dosage to 600mg 3x per day.
January 25 1999: Evaluated by Dr. Cr. and symptom assessment was major depression, chronic genitourinary pain, frustration, daily suicidal thoughts, depression obsession with my health. Unable to do mental calculations as engineer or complex decision making. Unable to be on feet and do physical, manual labor-and complete restriction from work.
February 1 1999: Dr. C. evaluated me on this day and due to chronic prostatitis, urethralgia, and testicle pain chronic intractable pain and viral infections limits all activities. Class 5 physical impairment with mental / nervous job stressors exacerbate symptoms with an undetermined prognosis. Expressed prostate secretions cultured a coagulase negative staph infection and have begun antibiotic therapy. At this time I am taking hydrocodone 7.5/700mg-1-2 tablets every 4 to 6 hours, neurontin 600mg 3x a day, valacyclovir 500 mg 2x a day, elavil 25mg at bedtime as needed, valium 5mg as needed for prostrate relaxation and ciprofloxacin 750mg 2x a day for the staph infection.
February 19 1999: MRI ordered for lumbar spine due to back pain since accident on 11/21/1997. Chronic pain in lower back, buttocks and legs.
March 3 1999: Dr J. reports MRI showed significant degenerative disc disease, disc bulges, narrowing of nerve root canals indicating nerve root impingement also a congenitally small spinal canal.
April 12 1999: Stopped Ciprofloxacin due to severe swelling and pain in knee' s. (possible tendonitis) can hardly walk. Pain seems to be increasing in my bladder area with increased urgency feelings. I still have severe chronic pain in my urethra which is only tolerable by hydrocodone, neurontin and valium medication.
April 24 1999: My knee's are better, my right one is painful and must limp but swelling is down some. My pain in genitourinary system and back remains the same.
May 13 1999: Dr C. prescribes Elmiron to see if it will help as he suspects IC as a possible problem and suggests a cystoscopy to confirm but explains there are no cures for IC -
My company has me on long term disability and I have been awarded SSDI and that's my story to date. Chronic intractable pain with suicidal thoughts are a daily process with me.
Tim updated his story in July 2002:
"Just to let everyone know that I am still around - I take 300mg neurontin 3x a day, oxycontin 20mg 2x a day and 500 mg valtrex 2x a day and sporanox 100mg 2x a week. This keeps my symptoms in check. Pot/cannabis seems to relax/relieve pain somewhat - but its illegal in many states so I do not advocate it unless you are willing to go to jail or move to a friendly med/pot state ... but when one has intractable pain one does and tries many things for relief. I thank all my doctors who have tried to help me and one who stills cares/counsels me, Dr. C. I have conceded to treat my symptoms and have given up hope at this time for a cure - maybe in time a cure will be found. Prostatitis is a very debilitating illness.
Another update in July 2006:
"I am still on disability due to chronic pain in my genitourinary system and back. I take 40mg Oxycontin 2x a day for pain, Valtrex 500mg 2x a day for suppressive herpetic therapy, Neurontin 300mg 3x a day for post herpetic neuralgia/neuropathic pain, Lipitor 40mg once a day for high cholesterol. It is the opinion from my infectious disease doctor that Herpes Simplex 1 & 2 viruses or Varicella Zoster virus (Herpes Zoster), infection which I have tested positive for in the genital area, has caused my prostatitis, chronic pain in urethra, testicles prostate and bladder (I am up 3-5 times a night due to urgency and bladder pain) which is still prevalent today, some days pain is debilitating, pain is constant, meds help so one can try to cope daily. Everyday I must lie down at times, fight side effects from medication plus try to be upbeat for my loved ones around me. I have suffered from this illness since the fall of 1997. Here is a page on shingles in the genital area"
Another Urologist comments on this case.
Webmaster's comment: Tim persists in seeing this as an infection issue to this day. Sufferers be warned: it is always possible to find doctors to support that view.