Medical Questions > Conditions and Diseases > HIV and AIDS Forum

Certain HIV positive, but negative tests (Page 70)

Must Read
Do you know what causes HIV? Get started by learning the facts on HIV and AIDS here....
Do you know what puts you at high risk of HIV? Debunk the myths and get the facts of HIV risk factors here....
Can you identify early HIV symptoms. Learn what to look for and when to seek medical help as we review symptoms of HIV here....

User Profile
May 6th, 2013
Extremely eHealthy
Azacytidine dreams
Scared,

1. All of my symptoms match yours.

2. WS & I came up with this idea when we were talking on the phone - if other people can get medications prescribed (to get high), we should be able to find a doctor willing to prescribe Azacytidine.

3. I found a hematologist on the GLMA (gay & lesbian medical association) dot org site, I'm going to reach out to him and ask him (Shail Maingi) to help us. Please all of you visit GLMA dot org and select 'find a provider', then 'find a provider' (again), then select 'hematologist' to see if you have a hematologist in your area and if you do, please bring the HTLV azacytidine medical paper with you when you speak to the hematologist.

Best wishes.
|
Did you find this post helpful?

User Profile
replied May 6th, 2013
Experienced User
Mgfcg, Tony
If you look at the latest studies on xmrv, you will find that everyone that tested positive was due to cross contamination, the same people were tested again and they showed up negative.
It has been proven that xmrv is a retrovirus that only infects mice.
Xmrv is not something to worry about.
On the other htlv is infectious to humans.
|
Did you find this post helpful?

User Profile
replied May 6th, 2013
Experienced User
Tony
You are doing a great job with the RX (treatment) findings, no body could keep up with you on that, please keep us updated on that, as soon as you find a Dr. Willing to prescribe let him know you know other people that are interested, you are right the pill is the option i would go for.
Keep us in mind.
|
Did you find this post helpful?
Users who thank Definatelyworried for this post: TonyDewitt 

User Profile
replied May 7th, 2013
Extremely eHealthy
Lets work together as a team please!!!
DW,

Thanks for the compliment, but we ALL need to go to the GLMA dot Org site and look up local hematologists in their "find a provider" directory and make the trip the their office(s) and ask about HTLV & Azacytidine - bring the John Meletis article with you. We have to focus our efforts and strength in numbers on this otherwise we're never going to find anyone willing to help us.

Those of you continuing testing, I'm not knocking you, but we're at the point that testing is becoming sublime. I've been tested more than any of you, and NOTHING has ever come back positive - WS, Scared, and others have done the same. I've been patient about saying "take the test, it will definitely be negative", but now my new stance is "why test, there's no point in wasting your time or money". I've tested so much that I am being chased by bill collectors for the 20 percent deductible that I cannot pay!!!

If you go to the Phoenix Rising forum, you will see people there who have had this for DECADES!!! Do any of you want to be having these SAME conversations TEN YEARS FROM NOW???

In the meantime, I've infected 46 people (women I've slept with who in turn infected their husbands). Ironically, these people are just sitting around waiting for death, and that's not my style, and I don't think any of you people on the forum are that type of lay down and die type, otherwise you wouldn't be here.

Regarding XMRV - it's a wrapper term for undetectable HTLV, which again proves that SO MANY people have this, the numbers are staggering. If you look up the number of "leukemia viruses" out there, which are retroviruses that infect mammals, there are many - feline (cat), murine (mouse), bovine (cow), etc. And of course, the human version, HTLV, which came from monkeys. Honestly it doesn't matter where the virus originated from, it only matters that it is inside our bodies and we have to get it out!!!

1. Embrace the fact that this is a retrovirus, and that it is killing us.

2. Then focus on anti-retroviral therapies (e.g. Azacytidine).

Best wishes.
|
Did you find this post helpful?

replied May 6th, 2013
Experienced User
My skin feels so itchy like there's bugs crawling inside my skin.. also leg pain and hip joints are really painful but I have to ignore thru all work days.. sometimes I get so deppressed just in disbelief that I'm gping thru this.. makes me think of the worst.. but hey a year later I'm still here living. I want to go in and re test for sypillis. Heps. And ho pe hopefully somebody can test me for mycoplasma and mrsa. And stomach.. be strong everyone.. hang in there.. we are here for support and advice..
|
Did you find this post helpful?
Users who thank Depressedman for this post: Definatelyworried  MyGooseFeelsCookedGuys 

replied May 6th, 2013
Experienced User
DW,

My wife's in denial she had the full std panel done as well the only thing she tested + for was HSV1 and HSV2 so I'm sure I have it to. She thinks its all in my head but she's always complaining she's tired she went through nausea vomiting, her eyelids are also darker than her skin color. I see alot of my symptoms in her but she blows them off because of all the negative tests. I know I infected her with something man I know it in my heart I just hope it's nothing really serious. But like I said she's in denial.

Goose, I have the teeth marks on the sides of my tongue as well since the exposure and frequently get headaches. I also thought about XMRV as well.

Tony, what do you think about XMRV is it a possibility maybe since mine was a high risk exposure (prostitue). Man I still can't believe I let my guard down and went that rout knowing I have a wife and kids to take care of. Man the things you do when your intoxicated.
|
Did you find this post helpful?

replied May 6th, 2013
Experienced User
Scared...was your high risk exposure unprotected?
|
Did you find this post helpful?

User Profile
replied May 7th, 2013
Extremely eHealthy
Scared,

My head hurt so bad the night before last that I couldn't even sleep! I hear you - seeing your partner fall apart with this has to make it twice as bad for you. I know seeing my female friends' faces get red and blotchy with dark eyelids reminds me that this is a real disease that's killing people. As soon as I showed up at my married friends' house last month I remarked on their red faces and they tried to blame it on spicy food - how's that for denial?

Scared, you need to let go of this "high risk exposure" stuff - we all had sex with the "wrong" person, meaning that the sex resulted in us getting infected, but retroviruses infect people who are rich, poor, black, white, and the list goes on & on. You were drunk, and I was emotionally devastated - would either of us have done the same thing if we were in our right state of mind? Absolutely not. But what's done is done, you need to stop beating yourself up (God knows I've been there a thousand times myself).

My philosophy is that fate put us on this road, and it's up to us to turn this into something good. As you stated, we both have kids - don't you want to beat this disease before one of our kids comes home to say that they have this after making the same mistake we did? I know I do - the only thing worse than what's already happening would be this happening to one of our kids. So please forgive yourself, and move your energy from blaming yourself to curing this, if not for yourself, for your partner, for your kids. We need a hematologist on our side, otherwise it's you & me wearing ski masks breaking into a pharmaceutical warehouse. WS is on board with solving this too - the time for idle chatting is coming to an end. We can break this thing wide open and show the world that there's a new epidemic, one that we would have not been a part of if we had been warned before hand.

Best wishes.
|
Did you find this post helpful?

User Profile
replied May 6th, 2013
Experienced User
S49
Believe me when I say xmrv in humans has been disproved I have scientific pages on this i wish i could send them to you. When i get home ill type in the name of the title to see if its available on line, ill send you the link if I find it. Also i keep seeing repitition about "Chinese hiv-like" not seeming to be contagious. Something's are worth worrying about, but I'm not worrying about "Chinese hiv-like" nor xmrv.
A blood count test is a good way to monitor some health aspects a Quest Diagnostics test number 5017t will tell you your cd4, cd8 and more also it will tell you what's out of range.
I hope this helps.
|
Did you find this post helpful?

replied May 6th, 2013
Experienced User
Is anyone having rib pain? Man it's hard for me to lay on my sides.
|
Did you find this post helpful?

replied May 6th, 2013
Experienced User
Yes...I am having rib pain on both sides and hurt if i lay on either side....my pain is also in stomach area too....this sucks badly man....i'm trying to hold on to sanity!
|
Did you find this post helpful?

User Profile
replied May 7th, 2013
Extremely eHealthy
Scared,

I couldn't sleep on my side for an entire year because of the side pain! Now it's just daily pain around the liver.

Best wishes.
|
Did you find this post helpful?

replied May 6th, 2013
Experienced User
DW,

The "aids like virus " is highly contagious via bodily fluids saliva as well. I'm not sure if you looked at the symptoms but have a read. I'm just wondering because mine was a very high risk exposure and you know how sex workers travel around the country. Who knows where this girl has been.
|
Did you find this post helpful?

replied May 6th, 2013
Experienced User
Whats the deal with this aids like virus??? I only heard of the one in China thats supposedly not contagious....
|
Did you find this post helpful?

User Profile
replied May 6th, 2013
Experienced User
You said you were on vacation when this happened. What state or country did this take place?
|
Did you find this post helpful?

User Profile
replied May 6th, 2013
Experienced User
This is why I'm not worrying about xmrv,
Here are a number of scientific studies you could read about.

Contamination of human DNA samples with mouse DNA can lead to false detection of XMRV-like sequences

Recombinant Origin of the Retrovirus XMRV

The tale of xenotropic murine leukemia virus-related virus
|
Did you find this post helpful?
Users who thank Definatelyworried for this post: msamsamsa 

replied May 7th, 2013
Experienced User
Where I live I need my GP referring me to an hermatologist. However all of them in my country have as specialism ''internal disease'' and their subspecialism is ''hermatoloy''. I have already been to a dr. specialising in ''internal disease'', I dont think my GP will allow me to visit one again Sad...
|
Did you find this post helpful?

replied May 7th, 2013
Experienced User
Goose,

Yes it was unprotected giving and receiving oral sex and deep kissing.

DW,

I was in Baltimore Maryland.

Tony,

I'm in all the way with the ski mask thing if that's what it takes count me in. And the only reason I say high risk is because she was a sex worker. I see my Hematologist next month he's the one that ordered the ct scan of my chest I have June 15th. Also monitoring my blood because I told him my WBC was low a few times.
|
Did you find this post helpful?
Users who thank Scared49 for this post: TonyDewitt 

User Profile
replied May 7th, 2013
Extremely eHealthy
Scared,

I hear you, but I'm also telling you that a couple that I'm friends with who DID NOT get this from me also got it somehow. And when I say couple, I mean a stay at home mom and an investment broker, not sex workers, not sleaze bags. I'm saying this so that #1 you'll see that this disease is not limited to sex workers, and #2 that anyone can get it from anyone.

Thank very very very much for being in all the way on the ski mask thing. As long as we have that type of dedication to getting this thing treated, we will defeat this f-in disease. Please bring your hematologist a copy of the Meletis / HTLV / Azacytidine article. Say that you want to get a year's worth of dosing of Azacytidine, preferably by twice daily pill instead of the injection. I already have an e-mail into the manufacturer to find out where they are in mass producing the pill form of Azacytidine, since that's more convenient and more effective than the injection. If the b*tch doesn't get back to me about where they are on production of the pill form, I'm going to call up the company and get aggressive with them.

Everyone else,

If you're in on this, it means that you are visiting local hematologist(s) with the Meletis / HTLV / Azacytidine article in your hand. Tell your local hematologist(s) that we are all sick and that we don't want to end up dead like the gang on TheBody site ten years ago. Yes, you'll have doors slammed in your faces, but if you are lucky, you'll find one hematologist that cares.

WS,

You're the only person besides Scared who has shown determination to beat this thing, and I also thank you from the bottom of my heart. Either we find a hematologist who is willing to prescribe Azacytidine for us, or we are going to the black market like we discussed. And if the authorities want to throw me in jail for trying to get treated for a disease that is killing me, they can go right ahead. I'd rather make the 6 o'clock news than sit at home watching my body deteriorate.

Best wishes.
|
Did you find this post helpful?

replied May 7th, 2013
Experienced User
Tony...do not count me out! This sh*t is bad and I will go anywhere/do anything to get relief. I'm still early on in this process so I still have additional steps to take but i will be talking about HTLV at my next appointment.
|
Did you find this post helpful?
Users who thank MyGooseFeelsCookedGuys for this post: TonyDewitt 

User Profile
replied May 7th, 2013
Extremely eHealthy
Goose,

Thanks very much - I will send you my number in a private message - we should talk.

Best wishes.
|
Did you find this post helpful?

User Profile
replied May 7th, 2013
Experienced User
S49
Giving and receiving oral would be considered very low risk. Unles you also had unprotected vaginal then the risk would be higher.
I don't think someone receiving money for sex in Baltimore is going to be traveling the country, let alone places of the world, i would think she has probably been to 2 other states max. Who knows maybe she uses condoms most of the time. I heard some people pay extra to have unprotected sex.
I know you will never do it again not even with a condom, and that is a step forward.
I hope this resolves for you.
|
Did you find this post helpful?

replied May 7th, 2013
Experienced User
DW,

You know it's funny you mentioned condoms because to start with she did put a condom on me but I was so f-in drunk I was taking forever to cum she took it off. She probably performed oral on me for over an hour I'm guessing. She probably realized I was a pretty clean guy and didn't mind I'm guessing. I mean wouldn't you think these girls know who does these kinds of things regularly or not?
|
Did you find this post helpful?

User Profile
replied May 9th, 2013
Extremely eHealthy
Scared,

Are you saying that you think you got infected via oral sex only? I'm asking because someone else also told me they got infected this way.

Best wishes.
|
Did you find this post helpful?

replied May 7th, 2013
Experienced User
Guys,

Is anyone experiencing middle back pain? It's like if I'm sitting up in a chair then lean back and put pressure it's like I feel something in spine putting pressure like something's there that shouldn't be there. It's hard to explain and I'm worried that it could be a tumor. Something's not right and I'm not getting anywhere with these f-in doctors. Does anyone else have this?
|
Did you find this post helpful?
Users who thank Scared49 for this post: TonyDewitt 

User Profile
replied May 7th, 2013
Extremely eHealthy
Scared,

I've been having major spine issues since this started - the virus causes damage to the spinal cord so this should not be a surprise.

Best wishes.
|
Did you find this post helpful?

replied May 8th, 2013
Experienced User
I have ''extreme stinging'' pain in my lower spine/back. It happens out of nowherre and usually stays for a couple of minutes. The stinging might be correlated with my hearthbeat, meaning it seems to ''follow'' my hearthbeat.
|
Did you find this post helpful?

replied May 8th, 2013
Experienced User
Hi guys,

I don't mean to barge in on your posts but I am also suffering from these symptoms believed to be htlv like you. I'm 28 from Sydney australia. I had exposure 3 times with a friend in dec and jan. I have been tested for all std and hiv after 3 months which were negative.

Aprox feb march I started to feel I'll. flu and fever with sore thorat. As of a couple of weeks ago I have had a fungal rash on my inner thigh and groin which has cleared up with cream. I have noticed red pimples on my body in random spots. I had stomach pains and was bloated. I had no appetite and lost abou 5kgs. I have red and white blotchy palms that come and go all the time. I am fatigued and have no energy. My back and legs are weak however not sure if this is from a previous neck/shoulder injury.

My stomach pains aren't as bad anymore and I am starting to eat more and have put weight back on.

My throat has been irritated ever since and has not cleared up. I've always got phlegm. My body feels hot throughout the day. My throat is really dry especially at night. I need to keep water with me.

I want to test for htlv however when I went to the sex clinic she declined to test me for this.

Any help would be great. Thank you so much
|
Did you find this post helpful?

User Profile
replied May 9th, 2013
Extremely eHealthy
Matt,

I share (or previously had) your symptoms:

1. Flu like symptoms, sore throat.
2. Rash on inner thigh, cleared up with anti-fungal.
3. Skin disorders.
4. Stomach pain.
5. Back and leg problems.
6. Red & white blotchy palms.
7. Always phlegm in throat.

Your case once again proves that the medical industry refuses to deal with this disease, especially because you are from a different country than the rest of us, and you're getting declined for HTLV testing - once again this proves the insanity of the medical industry to refuse to admit that HTLV exists, and that this is a WORLDWIDE problem.

Best wishes.
|
Did you find this post helpful?

replied May 8th, 2013
Experienced User
Also have muscle twitches and my gf now has just experienced sore throat n feeling hot.. I'm so scared..
|
Did you find this post helpful?

replied May 8th, 2013
Experienced User
Dear Matty

I am sorry to hear about your problems. Luckily we have this forum to share our ''problems'' and help each other.

In my humble opinion the best thing for you is to contact your GP and make an appointment with a internal disease doctor to start out with. Let him do his research on you and inform him about HTLV and the issues we as a big group have on this forum.

If there comes no ''conclusion'' out of his research on you, then I would advise you to follow the advice Tony has given us. But, I would just start out with an internal disease dr.

All the best.
|
Did you find this post helpful?
Users who thank msamsamsa for this post: TonyDewitt 

replied May 9th, 2013
Experienced User
Thanks for the reply and support. I will take ur opinion on board and I'm going to see the doc again.

Does anyone know htlv rates in Sydney?

How long do these symptoms appear? Especially the leg weakness and joints cracking?

Thank you all
|
Did you find this post helpful?

User Profile
replied May 9th, 2013
Extremely eHealthy
Matt,

Have you spoken to the person who infected you? No one knows the HTLV rates anywhere because the health authorities don't track this disease, because they refuse to admit it exists. I have a HIV-positive friend who's in college, and he told me that even in the college's health classes, HTLV is not even mentioned. So you see, we are dealing with much more than a disease, we are dealing with a complete and total denial by government, society, and the medical industry that this disease even exists!!!!!

Best wishes.
|
Did you find this post helpful?