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Experiencing symptoms? Read This!
Mar 27, 2005

Dr. Bob,

I just want to share my story so that others who think they might be experiencing ARS symptoms get immediate medical attention because there is a rare STD out there making the rounds that has very similar symptoms to ARS and serious complications if left untreated.

I am a married, white, upper middle class surburban mom who has not had a new sexual partner for more than 20 years. My husband recently traveled to Tashkent Uzbekistan on business. and while drunk, had normal vaginal sex with a female sex worker.(The jerk!) Unfortunately, the condom he used broke and he was exposed. He visited a Dr. four days after exposure and tested negative for all common STD's Then had sex with me using a condom, (no breaks) thinking he was being overly cautious protecting me from any possible STD's. In the mean time, within the first week of exposure he started experiencing a vague sort of pain in his penis and at 4 weeks, he experienced full blown flu like symptoms. Low grade fever, severe headache, general malaize, joint pain and body aches, exhaustion, every single ARS symptom except night sweats. The vague discomfort in his penis spread to the testicles and even into his lower abdomen. Then he experienced a rash on his Chest. He was positively positive that he was experiencing ARS symptoms and was devastated by his stupid drunken mistake. In the meantime, I began experiencing all the same symptoms minus the rash. I was even starting to believe we both might have HIV. But my exposure was with a condom; my doctor didn't think I could possibly have anything.And Dr. Bob, you've always assured people that HIV does not travel through an intact condom! My husband visited many doctors, they would prescribe a week of Doxycycline, then a penicillan shot, then Z-pacs. He was on Cipro for a month! Nothing helped! I went to the gynocologist within two weeks of sex with my husband and tested negative for all STD's. I still was feeling poorly and had a slight swelling in the groin area. The doctor commented on it but said "I'm not worried about that." I went to the doctor 4 times over the next 4 months and they thought I was crazy! They humored me and retested for everything again except for Clamydia thinking it deffinently would have shown up in the first test. Negative on everything. My husband and I were miserable because something was deffinently wrong and getting worse! Finally HIV tests for both of us confirmed we DID NOT have HIV. But nobody knew what was wrong with us. Finally my husband went to a urologist and lo and behold, somebody who could put a name to it! LGV. His urologist had just received an e-mail from the CDC about it making a comeback to the US. If you look on the internet, It implies that it is an STD only for Gay men having anal sex. Well I'm here to tell you, neither my husband or I have EVER had anal sex and we were not affected anally by it but we contracted it nevertheless and when I went back to my doctor and told him to specifically test my titer for Chlamydia, sure enough, it was what I was infected with. My husband and I had been living with LGV and are still fighting it for four months now. All the drugs he originally took lowered his Chlamydia titer but never completely got rid of it. and I guess I was tested too early or maybe they simply should have used the more sensitive test but I just want everyone to know out there that this is a serious, nasty, particularly hard to diagnose and get rid of strain of Chlamydia. My husband and I are on massive amounts of Erythromycin now. The daily dosage is so high that it causes us to vomit and we are still fighting to get rid of it because we did not catch it quickly. My doctor was completely embarrased by not being able to diagnose it and by making me feel like I was a hypocondriac. If your experiencing symptoms, just mention LGV to your doctor. Most Doctors in surburban areas have rarely seen LGV if at all. Especially if you have had contact with anyone who has had sexual contact with someone in Asia, South America or the Caribbean. I hope this long winded message might be able to help someone. Seek medical attention Worried Wells! Don't wait and worry!

Response from Dr. Frascino

Hello,

Thanks for your post.

LGV (lymphogranuloma venereum) has been relatively uncommon in industrialized nations, aside from some cases reported from the Netherlands and the United Kingdom. However, in February the CDC did report six cases in the United States. Since then, other cases have been popping up, mainly in gay and bisexual men. Among the U.S. cases reported so far, most have also had HIV/AIDS. Symptoms of LGV can include flu-like symptoms and a painful bloody rectal infection. Genital ulcers can also occur as can painful draining lymph nodes in the groin area. If identified early, LGV can be treated fairly easily with antibiotics. Left untreated, it can cause permanent damage to the bowels and disfigurement of the genitals (elephantiasis). LGV is a rare form of chlamydia and can be difficult to definitively diagnose.

I agree it's worth mentioning LGV to your doctor as a possibility, if you have symptoms that are consistent with this STD.

Good luck!

Dr. Bob



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