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Certain HIV positive, but negative tests (Page 78)

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June 14th, 2013
Experienced User
Tony , just want to say thanks again.

Your posts are always positive and helpful.

I know I / we have something.

A friend suggested that I go to an executive health screening -
I am looking into it. They may be more willing to test and believe me / us.
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replied June 17th, 2013
Extremely eHealthy
WS,

Thanks very much - I appreciate your recognition; I've been burned by doctors and even people on the web for my beliefs. I'm glad that you know that we have something. Thank you for continuing to pursue testing and finding a doctor who will listen. Besides treatments in development, I believe that the only existing treatment that can cure this permanently is Azacytidine.

Best wishes.
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replied June 15th, 2013
Experienced User
Has anyone done any further testing? I did bloods after 5months post exposure. All normal... Htlv neg test at 4months. Hiv std hep all neg fter 3 months
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replied June 15th, 2013
Experienced User
Ustas and scared plz test for parasites or other bateria. I know this is not htvl we need to let that theory go. We have to keep doing tests. Let the docs figure something out. We can't go in there acting like specialists. We just need to give them a list of our symptoms.. plz and thank u. Scared my boss had a bacterial infection in his lungs. Might wanna look it up some.. he said something like mycsotis or something like that.
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replied June 15th, 2013
Experienced User
-
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replied June 15th, 2013
Experienced User
From the study: living invisible htlv

“Living with HTLV is normal for me. I feel nothing, do not take any medication. For me, HTLV does not bring any problem, feel anything. How can I bring my mother to be tested, disturbing everyone?” (Silvia, 42 years old, married, asymptomatic, has three children).

“I prefer not to think and not bring my children to be tested. I think it is better this way. I'm dealing with HTLV. I do not want to mention it. If I do this, it can mess with my children minds”. (Victor, 33 years old, married, symptomatic - HAM/TSP)

“After I developed this disease my husband told me that I'm not good for anything anymore. As much as we do not want to remember this, this prejudice keeps reminding us of the disease” (Angelica, 26 years old, divorced, HAM/TSP, has three children).

“People already have a bias to get close because I was not walking well. If you have a problem, they say that you are no different. They say that you are the same. But it is not true! You have a huge problem because you have a difficulty to walk. Imagine if you say that you have an infectious disease” (Lidia, 34 year old, single, HAM/TSP, has no children).

“I can not accept it. I thought, why my story is so painful? HTLV is one heritage! I kept myself a virgin for my future husband. I did not get anything financially from my family but I inherited a disease” (Alba, 27 yeas old, married, HAM/TSP, has no children).

“HTLV is a painful thing because it's something we will carry for life”. (Walter, 33 years old, married, HAM/TSP).

“Having a child would be a burden of conscience. I would try to do something to no longer generate another discarded person in my family. Another contaminated one in the family.” (Alba, 27 years old, married, HAM/TSP, has no children, her father also has HAM/TSP).

“The doctor asked me what HTLV infection is. But I did not know it either. Even doctors do not know what it is, can I imagine? They said ‘I cannot say anything. I will first study and then I will see what I have to do’” (Maria, 27 years old, married, asymptomatic, pregnant, one child who is eight years old).

The obstetrician who provided prenatal care explained the following to Maria Rita: “You have a virus like AIDS. I do not know if this disease can be transmitted to the baby. I do not know anything about this virus”. Another medical staff member, during an ultrasound exam, told her: “If the virus has infected the baby, apparently it did not affect anything. But I do not know anything about this virus”.
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replied June 17th, 2013
Extremely eHealthy
DW,

Thanks for listing these HTLV examples - they prove that DOCTORS themselves do not know anything about this disease. Jay Lezalari (sp), one of the biggest HIV researchers in the world, exchanged emails with me where he expressed SURPRISE that 25 million people have HTLV. Would any of you feel confident with a doctor who didn't know anything about HTLV? I sure would NOT. How many doctors have we been to that didn't know anything about HTLV?

Our symptoms match HTLV:

1. Dermatitis.
2. Back & leg problems.
3. Generalized wasting, especially around the shoulders & hips.
4. Eye problems.
5. Fatigue.
6. Respiratory problems.

More importantly, people have died from this. The medical industry has betrayed us by never publicizing this disease, especially in endemic areas like the Carribean, Brazil, and Japan. Even Jamaica has been reported as having a serious HTLV problem, yet the Jamaicans that I banged never even heard of the disease - what the hell is that? I caught this from a Puerto Rican, much like Scared I regret that night ever happened.

I've asked Resperanza (who speaks better Portuguese than I do) to call the Gene ID office in San Carlo, Brazil, and ask them to sell me their new HTLV test kit. Since the current HTLV testing is crap, Gene ID has developed a new test. We all need to take that test. If that test is positive for all of us, that will prove that we have HTLV and then we can stop arguing about what is wrong with us.

Resperanza, please have that talk with the Gene ID people - I want to be tested with their test, I will pay you in advance for the test.

Everyone else - please consider taking the Gene ID test for HTLV - if we are all positive for HTLV, then we can focus on attacking HTLV instead of guessing, assuming, arguing, and bickering. Otherwise, we'll just be chatting until we all drop dead from this disease (via sepsis, leukemia, lymphoma, HAM, etc).

Best wishes.
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replied June 18th, 2013
Experienced User
Tony, Resperanza
I want a Gene ID test also.
But is the kit itself enough, don't we need the "machine" also?
Maybe if we all join and get it together, we could order it in bulk and be taken seriously.
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replied June 15th, 2013
Experienced User
I'm sure they tested positive for that disease. But everone here tested negative..
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replied June 16th, 2013
Experienced User
did anyone suspected reiter's syndrome?
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replied June 16th, 2013
Experienced User
Sounds interesting. Some similiar symptoms. Doesn't explain my red blotchy palms though.. I have been tested for inflammation which have been all negative...
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replied June 16th, 2013
Experienced User
Hey guys... Anyone heard of coxsackie virus? Let me know what you think....
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replied June 16th, 2013
Experienced User
About coxsackie virus:
There is no vaccine to protect against the viruses that cause hand, foot, and mouth disease.
A person can lower their risk of being infected by
Washing hands often with soap and water, especially after changing diapers and using the toilet. Visit CDC’s Clean Hands Save Lives! for more information.
Disinfecting dirty surfaces and soiled items, including toys. First wash the items with soap and water; then disinfect them with a solution of chlorine bleach (made by mixing 1 tablespoon of bleach and 4 cups of water).
Avoiding close contact such as kissing, hugging, or sharing eating utensils or cups with people with hand, foot, and mouth disease.
If a person has mouth sores, it might be painful to swallow. However, drinking liquids is important to stay hydrated. If a person cannot swallow enough liquids, these may need to be given through an IV in their vein.
Treatment
There is no specific treatment for hand, foot and mouth disease. However, some things can be done to relieve symptoms, such as
Taking over-the-counter medications to relieve pain and fever (Caution: Aspirin should not be given to children.)
Using mouthwashes or sprays that numb mouth pain
Persons who are concerned about their symptoms should contact their health care provider.
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replied June 16th, 2013
Experienced User
Does anyone else appear to have pale gums or is it just me?
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replied June 16th, 2013
Experienced User
HAPPY FATHER'S DAY!

I hope everyone has a blessed day. Trying to put things behind me and just learning to live with my new condition this really sucks.
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replied June 16th, 2013
Experienced User
I'm not a dad, I wish I was.
Im glad you are trying to put it behind you, I know eventually u will.
Happy Father's Day S49.
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replied June 16th, 2013
Experienced User
WK,

I'm not noticing pale gums but I do have red blotchy palms. My wife as well.
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replied June 16th, 2013
Experienced User
Very similiar symptoms... Anyone have any changes in their fingernails or toe nails? Anyone experiences weird dreams whilst sleeping during the night?
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replied June 17th, 2013
Extremely eHealthy
Definitely changes in my fingernails.
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replied June 16th, 2013
Experienced User
WK,

Yes I've been having very wierd dreams to since the exposure. Also to I've been having changes in my nails to lines, and thickening. I'm at a loss for words man I just don't know what to say or think anymore. I'm giving up and just accepting my new condition. I'm just so mad and angry at these I don't care dr's I feel like if something happens to me ESPECIALLY after all these visits and them basically laughing in my face and not caring take a few of them with me. What would I have to loose? That's pretty much where I'm at now severely depressed but loaded with anger. I just hope all of you end up with better luck than me.
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replied June 16th, 2013
Experienced User
I know how you feel... My nails seem to be thinner and pale... I have trouble getting comfortable and sleeping at night..

I'm still in contact with this girl which was the possible exposure


Have you got oral problems? Any changes of your genitals?
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replied June 17th, 2013
Experienced User
WK,

I'm to having difficulty sleeping at night especially on my sides. I'm having alot of rib discomfort. Also I have insomnia really bad. The oral problems are ulcers that come and go, dry mouth, red back of throat tonsil area, white coated tounge comes and goes, and cold sores on bottom lip off and on.
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replied June 17th, 2013
Experienced User
Guys I had a talk with metamed (founder of it is also the co-founder of skype). Unfortunately it's very expensive.

***Not trying to advertise or anything for this website, just want to share my progress in all this***

The founders and employees of the website seem like really intelligent and also openminded people, all have been very succesful in what they do. The website is quite new and so far they have helped roughly 15 people, mostly people who had undiagnosed problems or didn't get the right treatment with an already diagnosed disease. There will be a article in forbes magazine about one of those cases.

The estimate costs for me will be $5000,-, but it might be more, which are basically the costs for 24 hours of research. They seemed really confident that they would be able to find out what is wrong with me.

Basically I provide them with all my complaints, test results. They will do their research, discuss with each other, perhaps ask for my tests (which I then have to do with my GP/other dr).

If they don't find a proper diagnosis, the price will be negotiable.

It all depends wether my parents will support me in this or not, I have $5000 myself but it's too much for me to spend on it.

For what it's worth:
I do trust this website. I really don't expect the founder of skype, who probably has made a multi-million fortune with skype, to do anything sketchy.
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replied June 17th, 2013
Experienced User
Hi everyone!

Scared & Depressedman

I am positive that something is wrong inside and i am also sure it is something that can be transmitted during sexual contact. Cant say if it is through semen or saliva. My symptoms started a few days after my exposure and the same symptoms occurred in my wife a few days after i have intercourse with her.

Virus or bacteria? I'm not sure.
I was tested positive for two bacterias, Mycoplasma and H. pylori

I am trying to find a doctor that is an expert in infections/deseases. That might be hard for me to find though.

There are times when i felt really great and like i could lift mountains and then later on......burning sensations and tingling, loose stool, bad smelling gases.

Blotchy palms, i have that as well.
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replied June 17th, 2013
Experienced User
Sounds very similiar to me... However my symptoms didn't start straight away... Couple months I think... I think I have also passed of on to my missus.
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replied June 17th, 2013
Experienced User
Ustas,

You've been here for a while now and I've always thought we have the same thing based on our symptoms. Did you ever get retested for H pylori after you completed treatment to make sure it worked or not? I haven't got retested for it yet. Whatever this is my friend I believe we have the same thing. My stools are always loose to and my gas is horrible smelling to like sulfur or rotten eggs. I never had this until the exposure.
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