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Hello,

I had an unprotected sex about 7 months ago. I have done the diagnosis for all the STDs including HTLV 1 and 2. Everything came out negative at the mark of 180 days after the exposure. I still have lots of symptoms that includes joint pain, mostly my knee joint, and burning sensation on the lower back, white tongue with hyper salivation and teeth marks on the side of the tongue, also pins and needles feeling over the body and feeling of numbness on legs.

These started happening 2-3 weeks after the sexual intercourse and it hasn't got any better but worse. I have already seen few doctors and they say its all in my head but i know its not just in my head. It is for real and its been bothering my day to day life.

I am very much concerned about the HTLV test since there is no specific window period as for HIV and other infectious disease.

Can anyone help me out with the diagnose and tell me what htlv window period is?
8 Responses
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Avatar universal
hey did you end up having htlv? I have the same symptoms as you and I'm very afraid.
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Avatar universal
HTLV I and II DNA PCR Negative at the mark of 8 months after exposure. Still have itchy urethra and bladder. White tongue and knèe joint pain.
Helpful - 0
1 Comments
Sabinsharma,

Have you been checked for yeast? That is common for anyone. White tongue may not be yeast. It can be normal bacteria overgrowth. A lot of people think they have yeast and it is just bacteria. Joint pain may be osteoarthris or arthritis. Did you say you got checked for RA? Try taking chondritin for a few months and see if the knee pain goes away. Mine did. Also, to check for tongue yeast if you use a tooth brush that has a tongue cleaner on the backside you can scrape your tongue to clean off the white stuff on the tongue. If it bleeds without too much pressure (regular cleaning pressure) it could be yeast, if not it probably isn't. Your dentist can tell you or you can get your doctor to test it. They can look at it and tell. They are really good at it. The dentist can tell too.  So if you do have yeast in the bladder and/or urethra have you tried an OTC treatment for it? Or is it actually in the urine?
If it is just on the outside try using Teribinfine cream. It is okay to use externally and if it is a resistant type then it should work.  Are you diabetic? If so diabetics get yeast more often then others and also infections in general.
regards,
mkh9
Avatar universal
I have been told that HTLV test are not reliable. Neither the antibody test or PCR test.
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Avatar universal
Negative test on HTLV 1 AND 2 after 215 days of unprotected sex but symptom persist. Joint pain mostly knee joint pain, scalloped white tongue. Burning back, thigh pain.
I m having hell of a life.
Helpful - 0
8 Comments
Great news on those tests!  You may just have a back injury or muscle imbalance that is causing your symptoms. I had something like that for years. It was in my low back pain and went down my whole whole leg (not sciatica) and it was also not nerve problems either. It may have started out as an injury but turned into tight quads pulling on my back and knee. But if yours is burning pain it could be nerve pain. You could see a neurologist for it. They can do some tests. Maybe try neurontin to see if the pain gets better.
mkh9
Well, I have been in contact with a guy named Richard Engnath and he says he has been doing study about HTLV I and II since 2006 and he have read 1000's of paper in the particular subject field. And he suggest me that it is more likely i have been infected with HTLV since the antibody test does not show up on some people for maybe up to 2 years or more. He asked me to call some IDMDs and ask them if they are familiar with HTLVs and make an appointment for a consultation with him/her.
I have been trying to find one in my area (DFW). I haven't been lucky to find anyone so far. I need help on finding a doctor who is familiar with HTLV's please ?? anyone help would be really appreciated.
We don't really give referrals on MedHelp. So I would ask the person you are talking with for a referral.
mkh9
I got my results today
My Rheumatoid Factor, ANA IFA Panel comprehensive is all negative.
I still have itchy urethra and itchy sensation on bladder and burning knee joint pain.
The itchy urethra may be due to a yeast. You can talk to your doctor about that. Maybe get an ultrasound or scan of the knee. I'm on vacation until tuesday. Take care.
THanks Mkh9, I hope you had a nice vacation.
I talked to the doctor and he told me if it was a yeast infection then my WBC would be high which I never had. My tongue gets white every 2-3 days regardless of brushing my teeth everyday. Plus I have pain on my urethra all the time, plus itchy bladder, joint pain,thigh muscle pain, pain on arm and legs.I am planning on getting a PCR test for HTLV 1 and 2 through LabCorp. Hopefully I get some answers.
I have tried Myonal (50g) twice a day that gives me some relief in my case. See if that helps you.
Avatar universal
Well, I forgot to mention that I aquired Herpes 1 from that encounter. I never had any lesion or any type of cold sore or ulcers. I do not know where it is. It could be above the waist or below the waist or both. My doctor tells me joint pain and neurological pins and pricks could from herpes. But I highly doubt that. All the symptoms fits to be HTLV - burning sensation on back, joint pain, scalloped tongue, pins and pricks all over the body and also ringing on ears.
I do not know if these are all manifested from my head but its all there and I have tested negative on antibody test for HTLV 1 n 2 along with HIV 1 n 2 180 days after the sexual encounter.
I was also wondering if there is so many symptoms wouldnt it show up on my blood since this has been going on for 5 months now.
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
HTLV-1 usually is acquired from a IV drug user or blood contact. It is very very rarely obtained from sexual intercourse and that is usually not in the U.S. Although it can happen it is rare. Most cases are Lymphoma or leukemia and those are inflammatory are usually IV drug use and only rarely by sexual contact and not usually in the U.S. As for the window period  I only saw one article and the window was very long such as 2 years.

HTLV 2 is usually also acquired by sharing needles or by breast feeding.

Here is something from med help.
http://www.medhelp.org/posts/STDs---STIs/HTLV-Window-Period/show/1748643
This is from a previous question.

I assume you have been tested for Syphilis and Gonorrhea (GC). GC can sometimes get into the joints if left untreated and syphilis test has a 20% false negative rate so if you had the RPR you may want to get re-tested using the FTA-antibody test if you are not from outside the U.S.

Regards,

mkh9
Helpful - 0
6 Comments
Thank you MKH9! I had a doctors appointment today. I had all the std check at the mark of 6 months. I talk to my doctor about HTLV concern she said there is such disease and its a cousin of HIV. Since my CBC is normal she told me we will repeat the standard std test along with HTLV at 1 year mark.
There is nothing i could do at the moment rather than to regret about that night and wait n see what my future holds.
I just wish i could let go of this but it bothers me alot.!!
I think the doctor is right that your CBC would have shown it. Also, that it is very rare. So, hopefully that helps.
take care,
mkh9
I had white blood count fluctuations and low platelet counts for about 3 months and now its back to normal, but still have fluctuation. I have had joint pain and neurological pins and pricks throughout the body after 4 weeks of exposure. I have done HTLV test at 6 months mark and I am still worried if the problems are due to the virus.
If the problem was due to HTLV wouldn't it show up in my antibody test after such a long period ?
Yes but your white count would be really really high like 20,000 or really really low like 2-3,000. So, these small fluctuations don't mean a lot. It is just your body's natural defenses that you don't normally see until you get a blood test. Try not to worry about that. The joint pain if it is new you can check to see if you have a positive Rheumatoid arthritis test also Antinuclear antibodies. It maybe something else. You can get septic arthritis but you said the gonorrhea test was negative? So that is not likely and you would have a high fever >101 if you got septic. Are you on any new medications. That could causes these symptoms.
mkh9
Well, I forgot to mention that I aquired Herpes 1 from that encounter. I never had any lesion or any type of cold sore or ulcers. I do not know where it is. It could be above the waist or below the waist or both. My doctor tells me joint pain and neurological pins and pricks could from herpes. But I highly doubt that. All the symptoms fits to be HTLV - burning sensation on back, joint pain, scalloped tongue, pins and pricks all over the body and also ringing on ears.
I do not know if these are all manifested from my head but its all there and I have tested negative on antibody test for HTLV 1 n 2 along with HIV 1 n 2 180 days after the sexual encounter.
I was also wondering if there is so many symptoms wouldnt it show up on my blood since this has been going on for 5 months now.
and recently i am having thigh pains...
Avatar universal
Anyone please ??
Helpful - 0
Avatar universal
And the exposure was outside of United States. Also, i have urethral pain and testicular pain that comes and goes. Please help me out !
Helpful - 0
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