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Scary symptoms no answers
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Scary symptoms no answers

I had a risky encounter 9 months ago now

Lets start with symptoms I have had

Night Sweats
Oral Thrush after 8 weeks
Weight Loss of 20 lbs after 8 weeks
Hair Loss
Itchy all over
Tingling in back
Geographic Tongue
Hot Sweats
Persistent Sore Throat
Trouble Breathing

Symptoms as of today

High Pitched Ringing in my ears
Geographic Tongue for the last 6 months
Tingling hands and arms nightly while I sleep, persistently wakes me up
Tingling hands and feet throughout the day.
Tooth pain, two cavities and 1 broken tooth in the last 3 months. (never a problem before)?
17 Little RED anginomes have pop up
2 New flesh colored moles have popped up
Hair Line rash/bumps on forehead. Not acne since they have remained with no whiteheads for over 6 months.
Muscle weakness and joint pain after tingling sensations


My testing included

PCR HCV Negative
Full Hepatitis Panel past the typical window period Negative
Syphillis (syphilis), twice both Negative

HIV
2 Gen-probe
6 Oral Swabs
6 Blood antibody tests.  All Negative with the last at 8 1/2 months post exposure

My questions are in the order of my most concerning to my least

Do my symptoms sound like HIV infection?

Any chance I could still have HIV?

If not HIV, WHAT???

What DOCTOR should I see

Any suggestions of different testing I should take.

Anyone who has gone through and finally found an answer that they could share

I thank you for your time and any consideration.
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4250906_tn?1369812956
I think you would know if the condom broke.
But I'll give you my thought on your questions.
Was the oral thrush diagnosed by a doctor?
Other than this your symptoms don't nessesarely have to do anything with hiv.

If you didn't test positive for hiv at 8.5 months you are not going to test positive from the same exposure. No more hiv testing unless you put yourself at risk again.

Maybe you just have high anxiety and therefore you did not eat well nor were careful with your hygiene and caused you to experience some abnormalities.

If you were not diagnosed with a std you should be fine.
10 Comments
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4250906_tn?1369812956
Can you explain to me your risk exposure? I'm practically in the same situation as you.
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Avatar_m_tn
Possible condom break with Asian Sex worker.
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4250906_tn?1369812956
I think you would know if the condom broke.
But I'll give you my thought on your questions.
Was the oral thrush diagnosed by a doctor?
Other than this your symptoms don't nessesarely have to do anything with hiv.

If you didn't test positive for hiv at 8.5 months you are not going to test positive from the same exposure. No more hiv testing unless you put yourself at risk again.

Maybe you just have high anxiety and therefore you did not eat well nor were careful with your hygiene and caused you to experience some abnormalities.

If you were not diagnosed with a std you should be fine.
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Avatar_m_tn
I just got my HTLV 1/2 back and it was inconclusive?

My question is if I have had this for 9 months wouldn't I be definitely negative or definitely positive by now.

Is it possible to already displaying myelopathy within the first few months of the disease?

Am I just going crazy. I sure hope so.
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Avatar_m_tn
I just got my HTLV 1/2 back and it was inconclusive?

My question is if I have had this for 9 months wouldn't I be definitely negative or definitely positive by now.

Is it possible to already displaying myelopathy within the first few months of the disease?

Am I just going crazy. I sure hope so.
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4250906_tn?1369812956
Hey I'm right here. I know it must be tuff. I have been actually talking to somebody who has been diagnosed with htlv type 2. He is the director of the htlv national registry for the U.S. We will be here to help as much as we could all along the way. We would think it is unlikely that you would get htlv from a onetime exposure. I'm thinking it could be a false or inaccurate result. But just to try to be of comfort we will be here to try to answer your questions.
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Avatar_m_tn
This is good news to hear. I really appreciate the support. My real concern is for my wife who is breastfeeding my 1 1/2  year old son. Thank I will try and get some rest right now.
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4250906_tn?1369812956
To try to answer your questions.
My question is if I have had this for 9 months wouldn't I be definitely negative or definitely positive by now.

Testing for htlv is quite tricky i would say. We believe the window period for htlv is longer than it is for hiv. But inconclusive test results are not uncommon. There are three approaches i think you could take.
1. Get a HTLV 1/2 PCR DNA test as soon as possible.
2. Retest with the same test in 2-3 months.
3. Get a western blot or a inno lia test in 1-3 months.

Is it possible to already displaying myelopathy within the first few months of the disease?

I would say its extreamly rare you would be displaying myelopathy within your time frame. Out of all the symptoms you discribed the ringing in your ear(s) could possibly be attributed to early htlv.
The person that i been talking to has had it for over 10 years he told me of his early symptoms. But he has no myelopathy.
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Avatar_m_tn
What about the denuded tongue, loss of papillia
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Avatar_m_tn
I am having a terrible time with the Doctor's around here. I even went to an infectious diseases Doctor and she shrugged off all of my symptoms and said it was just in my head. I even asked specifically if we should test for HTLV I/II and she refused to. It was only after I strong armed my PCP to run the test, did I get it. Below are my test results. Any insight is welcomed. Thank you for being around.

GD21  0
P19     0
P24     2
P26      0
p28      0
p32      0
p36      0
gp46    0
p53      0
rgp46-II 0
rgp46-I   0

Inconclusive

What do you and your friends think? What is the likely hood. Is this a sign of acute infection?
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