I hope you’re well. Thank you again for having this website and us being able to ask questions. I’ve looked into the forum and I’ve tried to find similar questions, which I did, but I still would like your honest opinion in my situation. 

I’m a female, 28, coming from a non endemic (HTLV1/2) country. When I was younger I was however, I was unfortunately having sex with a lot of people (now it’s probably around 180 ppl more or less) and yes, many unprotected. I learned my lesson when I got HSV2 recently. I’ve had one or two partners in my life from technically endemic countries. 

Anyways, recently this year I’ve started to have bladder issues. Pressure, more frequency, feeling off not being able to empty but no UTI. I went down the rabbit hole about HAM with HTLV and read how it affects more women and bladder issues are usually the first sign. I read about a case where a woman got HTLV as an adult and developed HAM from it. 

I am aware of how rare it is and I’ve also heard how many of the positive tests are false positive (before confirmation). 

Do you think I should take a HTLV test or would it be not recommended in my situation? 

Thank you. 

1.  Your symptoms are relatively nonspecific, and if you were concerned about them, my advice would be to see a urologist rather than to assume that this is HTLV infection.  In my opinion, this is the most important starting point to address your concerns.

2.  If you have ever donated blood, you have been tested for HTLV and if you were not notified, it is most unlikely that you have that infection.

3. I suspect the Internet has taken you down a “rabbit hole” over the topic of HTLV infections and, as you mentioned while false positives may occur as they do for virtually all blood tests, the confirmatory process is quite effective for ruling out the possibility.  If a preliminary screening test is positive, you can go and get tested if you want to as long as confirmatory testing is in place. Your results will be accurate. 

Again, I think it is very unlikely that you have HTLV infection and the starting point for evaluation of the symptoms that concern you is to see a urologist rather than search the Internet for obscure possibilities such as HOV. I hope this information is helpful. EWH.

Yes, thank you, I will definitely meet up with a urologist now! 

So in conclusion due to my situation, I don’t need an HTLV test? Would you recommend against it?