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Certain HIV positive, but negative tests (Page 69)

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May 2nd, 2013
Experienced User
DW,

It was nice to talk with you, I'm off here now got work at 7:00 a.m. E.T. I'll keep you guys updated on any testing I have done. Goodnight everyone.
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replied May 2nd, 2013
Experienced User
DW,

Yeah I read about it and wondered about it as well. I'll try to get it if I can and keep you posted as well.
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replied May 2nd, 2013
Experienced User
Ok let me know.
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replied May 3rd, 2013
Experienced User
Guys,

I'm also still having pain under my right ribcage, these ct scans keep showing a leision on my liver but they say "it's to small to characterize statiscally most likely a cyst". I don't see my Gastroenterologist for another month. I'm gonna ask him about getting it biopsied. Is anyone else having pain in their liver area? My knees are also sore.

EVERYONE, please keep us posted on any testing you have done, or if you find anything out. Good Luck Everyone,
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replied May 3rd, 2013
Extremely eHealthy
Scared,

I have liver pain DAILY, and knee pain as well.

Best wishes.
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replied May 4th, 2013
Experienced User
EVERYONE, please keep us posted on any testing you have done, or if you find anything out.

S49

I agree. We should keep each other updated.
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replied May 3rd, 2013
Experienced User
Guys,

Is it me or is this forum messing up, I can never get to the last page unless I post a comment. Is anyone else having this same problem?
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replied May 4th, 2013
Experienced User
S49 I'm having problems with this thread also. Sometimes i get topic reply notifications and sometimes I don't.
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replied May 4th, 2013
Experienced User
Ok... I Tested 7 months negative.

My new dr took 18 vials of bloods for different tests including htlv.

And X-rays

Should find out in 2 weeks or so
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Users who thank wyomingscared for this post: Definatelyworried  TonyDewitt 

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replied May 4th, 2013
Extremely eHealthy
WS,

I told you that you were going to test HIV negative, and you did! We're all sick WAY beyond the window period for HIV, and all of us have tested negative MULTIPLE times (8 times for me) for HIV. What's killing us is not HIV, and it can be cured.

Best wishes.
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Users who thank TonyDewitt for this post: msamsamsa 

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replied May 4th, 2013
Experienced User
Wyoming

Can you please list the tests they are performing on you?

Also did you ask your Dr. what the window period for htlv is?
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replied May 4th, 2013
Experienced User
Guys,

Is anyone having knee pain or pain behind the knees I'm wondering if its my lymphnodes behind my knees that's hurting. Also is anyone having dry mouth?
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replied May 4th, 2013
Experienced User
WS,

You don't have HIV trust me 13 weeks is 100% conclusive unless you have a severely depleted immune system. Your waisting time and money TRUST ME I know. It's hard man I know I thought for sure I had hiv so did everyone else on this forum. You have to let it go and pursue other things. Good luck.
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replied May 5th, 2013
Extremely eHealthy
Scared,

Amen to that! We have to stop focusing on HIV, since we don't have that thank God.

Best wishes.
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replied May 4th, 2013
Experienced User
S49
My mouth gets dry at times. My knees hurt sometimes because i stand and walk all day. Are you standing a lot?
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replied May 5th, 2013
Extremely eHealthy
DW,

I owe you an apology - when you told me that you got sick by receiving oral sex, I thought that was basically impossible. Then when another forum member told me that's how he got sick, I realized this disease is more contagious than I thought. Your symptoms are more & more sounding like what the rest of us have.

Best wishes.
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replied May 5th, 2013
Experienced User
Tony
I did not receive oral sex.
There was some mutual masterbation between her and I since we had no condom, but she then forced her self on top, it happened so fast i did struggle for a bit for it not to happen, there was some rubbing between her vagina and my tip, unfortunately there was slight penetration, when i felt the penetration that's when I pushed her off, too late however.
I got a small bump on the end of my shaft by the tip one dr. Said it was hpv. Fortunately the bump resolved after a few months. The woman that it happened with is a friend of one of my friends. I got to know her a bit unfortunately she is a high risk woman:(
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replied May 4th, 2013
Experienced User
S49
Did you look into doxycycline?
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replied May 5th, 2013
Experienced User
DW,

Yeah I'm on my feet quite a bit and I work in a factory the floor is concrete, but the pain behind my knees is concerning me im wondering if its the lymphnodes that's hurting. I haven't seen my dr. yet to ask about doxycycline I'll look into it though.
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replied May 5th, 2013
Experienced User
S49
I can't say much about the pain behind your knees, I think it could be anything. But I think generally if one set of lymphnodes are swollen then i would expect another set like your armpits, neck or growing lymphnodes to be swollen also.
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replied May 5th, 2013
Experienced User
Last night i was felling a sensation on my growing lymphnodes and i might have been imagining some swelling, well if there was swelling it was minimal. For now I'm going to have to incline to the probability it was my imagination. It sucks though how any little change we attribute it to the risk exposure. I hope we are ok and could forget about this one day.
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replied May 5th, 2013
Experienced User
I have mostly pains around my liver area, I dont think directly the liver. the last years I have had insane pains in my (bowels I think) 3 times. 2 times around my liver area (a bit lower) and once bottom left on my belly. 2 times it was so bad that I could not walk for half of the day. I went to the dr and he said it was nothing.

I have pains daily around my chest/belly etc. When I feel those pains, it feels like my body is not clean from the inside and that the pain is caused by ''waist''. I know this sounds weird, but that is the first thing that comes up when I have those pains. The pains are very global on my body.

Furthermore I have pimples on my leg and other places. I am currently 20 and I have never got these on my legs/chest/etc, other than on my face. On my face I have a chronic rash which started on my right cheek. Then it moved up to around my ear etc. Now it is also on my forehead and left side of my face (ear height). Mostly the rash is where my hair on my head starts.

I also have noticed that my throat symptoms/stomach problems are WAY worse the day after I have eaten really bad. The last few months I have been eating really bad. The first few months when this all started I took vitamins/eated really healthy. But at the time it all did not make me feel better. So I just started eating a lot of sugar products/cola/etc. However now I have noticed that days where I eat/drink a lot of this ''poison'' I feel really bad the day after.

All the best to all.
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replied May 5th, 2013
Experienced User
msa
Some of your symptoms sound a bit serious and other of your symptoms don't.
Nonetheless those are strange symptoms. I hope they have nothing to do with your risk exposure.
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Users who thank Definatelyworried for this post: msamsamsa 

replied May 5th, 2013
Experienced User
Hi,

Thanks for your reply.

These are just some of my symptoms. I have got many more, some more serious/annoying than others. Another symptom I have for example is a lot of swollen lymphnodes, up to 2.5cm, and often a lot of ''stingy'' pain around them.
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replied May 5th, 2013
Experienced User
msa
That is unfortunate.
What do you think could be causing it?
Are you planning on more test?
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replied May 5th, 2013
Extremely eHealthy
M,

We share

1. Liver pain.
2. Global pain.
3. Facial and hairline pimples (seborrhic dermatitis).

Best wishes.
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replied May 5th, 2013
Experienced User
Hi every one, i list all my symptoms here
Numbness on leg
Spots and pimples on face, leg,butt
Lower leg pain,
Pins and needles on body
Eye pain, eye itchy, spot lights in front of eye when i sneez
Crinkling noise at the back of neck
Floaters on eye, blurred vision
Tremors
Leg weakness
Mild back pain
Dry mouth mostly at nite
Dry skin
Swollen belly
Lot of gas, bloating
gained lot of weight
I feel energetic some times and vision gets better on bright sunny day
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Users who thank adviseme for this post: TonyDewitt 

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replied May 5th, 2013
Experienced User
adviseme
your symptoms sound somewhat mild and it sounds like you are feeling better. Let us know about any changes.
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replied May 5th, 2013
Extremely eHealthy
AdviseMe,

Some of the symptoms you mentioned are worth repeating:

1. Light spots on eyes when sneezing / straining.
2. Eye floaters / vision problems.
3. Dry skin.
4. Dry mouth.
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replied May 5th, 2013
Experienced User
Hi Everyone...I'm believe i'm experiencing the issue as most of everyone here....

My symptoms are

Serious Fatigue
Body aches and pain
neck pain
pimples on chest and back
persistent headache
loss of appetite
weird strange pains in my stomach on both sides
sore lymph nodes under arms
depression
light sensitivity
jaw pain/aches
ear ache
weird mild sore throat
hip and ass pain like somebody is stabbing me with a sword

My issues began in March after PROTECTED sex. I have tested for HIV, Hep and other stuff but i'm under the 3 month window.... i will be going back for all other tests next moth and again in 6 months...

I will talk about HTLV with my doctor at my next session

liver tests were normal as well as all blood work. (my WBC was on the lower end but in the normal range)

i will keep everyone posted on all testing and news

The depression associated with this is severe...not a day goes by I don't think about cutting my own throat.... I guess we gotta keep fighting until we win or lose....
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replied May 5th, 2013
Experienced User
Goose
Your std test are going to be negative you used protection.
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replied May 5th, 2013
Extremely eHealthy
Goose,

Like I wrote before, people are reporting illness even after "safe" sex. Even if you engage in unprotected oral sex, you are at risk. One guy came in touch with vaginal fluids while removing the condom and got infected.

Guys, I know this is a hard sell, but this is HTLV. We all have very similar symptoms, we are all testing negative for HIV. If we start getting treated, and our symptoms improve or resolve, then we're the luckiest people in the world. Start hitting on the hematologists.

Best wishes.
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replied May 5th, 2013
Experienced User
DW,

I do have lump feelings under my armpits, but when I try to feel I can't feel the lumps. It's wierd I just don't know.

Adviseme, Mgfcg, and msamsamsa I have all your symptoms as well. What can this be???????
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replied May 5th, 2013
Experienced User
S49
What do you think it could be?
Do you think it could be htlv or are you worried its something else?
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replied May 5th, 2013
Experienced User
I think it could be HTLV. In my case, since i'm still under the 3 month window, i still have to test for HIV and HEP...if my test for those are negative, i believe it could be HTLV because the girl i was with..her ex was from the Caribbean or some island. The girl I was with showed me her HIV test and it was negative...I asked her to get tested after I started having issues. She told me she has had no issues whatsover ( I don't believe her but I guess it doesn't matter)..I will talk to my doctor about HTLV. This is crazy!
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replied May 5th, 2013
Experienced User
DW,

It could very well be HTLV I'm not ruling it out however I do have a negative antibody test for HTLV. Not sure if means anything or not I'm still wondering about this "aids like virus" as we'll considering my exposure was with a very high risk woman. I don't know man but its killing me I just wish us all the best and pray this nightmare will be over soon.
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replied May 5th, 2013
Experienced User
S49
You and I are in a similar situation, we had an unprotected risk exposure with a risky woman, I think i know your story and I could relate to you, one thing in your favor is that you are at about 2 years into this. So what ever test you take right now is as good as conclusive. I really hope that we are only letting our minds getting the best of us. I think if you got tested for hiv, hep c, hep b, and htlv after the appropriate window period there are not anymore test you can take.
Scientist are always looking for new viruses, that's how they identified htlv 3 and htlv 4.
These viruses were discovered in 2005 in rural Cameroon, and were, it is presumed, transmitted from monkeys to hunters of monkeys through bites and scratches.
Are your symptoms improving or worsening?
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replied May 6th, 2013
Experienced User
I can only think of MS and Htlv to my problems.
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Users who thank adviseme for this post: TonyDewitt 

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replied May 6th, 2013
Extremely eHealthy
There's medical literature linking MS to HTLV.
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replied May 6th, 2013
Extremely eHealthy
WS, Scared, et al,

I've been in touch with Doctor Louis Mansky's lab regarding their work, and it occurred to me that taking Azacytidine orally would be easier than having it by injection. After searching for "oral azacytidine", I discovered that late last year the manufacturer (Celgene) completed and published a trial of oral azacytidine - this is important to us because:

1. Taking azacytidine orally is easier than an injection, i.e. taking a pill is much easier than getting a needle.

2. Taking azacytidine orally allows for more continuous dosing, i.e. patients were given the oral medication 14 or 21 days per 28 day cycle versus only 7 days for the injection.

3. Perhaps most importantly, the oral (pill) form of Azacytidine should be easier for us to acquire than the injectable form.

Perhaps we should form a buyer's club the same way that HIV sufferers did in the 80's & 90's for the medications that they needed.

Best wishes.
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Users who thank TonyDewitt for this post: Definatelyworried 

replied May 6th, 2013
Experienced User
Count me in man...i can barely make it through the day like this...I will go anywhere and do anything for relief... Have you heard of XMRV? Can we sick with that virus?

Tony I see you've been on here for awhile, have your symptoms lessened at all? or gotten worse?
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replied May 6th, 2013
Extremely eHealthy
MGFCG,

Thanks - XMRV is also a retrovirus, and is what people turn to when they can't test positive for HTLV. My symptoms have changed in the last year & a half since I got infected, in the beginning I was bloated and had paralysis, now I'm less sore but experiencing serious wasting.

Today was one of those days where I also said "I can barely make it through the day like this", so I hear you. Last night was terrible, I could barely sleep because my body was in such pain.

Best wishes.
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replied May 6th, 2013
Experienced User
Have you experienced "teeth" marks in your tongue? Do you have a persistent headache? Today I could barely focus on anything....and this headache is nuts!
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replied May 6th, 2013
Experienced User
DW,

My symptoms are pretty much the same and stable. Lots of IBS symptoms, dry mouth, fatigue, muscle pain, weakness, muscle waisting, itchy upper chest collarbone area, dark eyelids, back pain, liver pain, pain behind knees, light headedness, memory problems, insomnia, nausea and the list goes on.

Tony,

How do we convince a Dr. to prescribe this medication? Just about every Dr. I've seen pretty much just blows me off as anxiety or wants to refer me to a psychiatrist.
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replied May 6th, 2013
Experienced User
S49
What about your wife's symptoms do they worse or better?
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