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Certain HIV positive, but negative tests (Page 73)

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May 16th, 2013
Experienced User
Tony I got the girl tested by pcr at 7.5 months Negative. I'm still not done testing.
What type does Alberto have type 1 or type 2? Is there something I could read about his infection? Do you have a link?
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replied May 16th, 2013
Extremely eHealthy
He's somebody I met on the Phoenix Rising forum, he was sending me emails about his condition, then the last email said that he had MF, Leukemia, etc. Since he hasn't replied to my emails, he could be dead for all I know.

Best wishes.
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replied May 17th, 2013
Experienced User
Did he say what type he has?
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replied May 19th, 2013
Experienced User
How did you get her tested by PCR? Are you in America? Did you ask your Dr about it and they agreed?
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replied May 21st, 2013
Experienced User
Goose
Yes I'm in the usa. A commercial doctor ordered the test he is completely fine with me ordering htlv pcr or htlv WB test. Where are you located?
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replied May 21st, 2013
Experienced User
I'm in MI where are you?
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replied May 21st, 2013
Experienced User
Goose
I'm in CA.
I'm sorry but i have a hard time believing that you have anything, i don't mean to sound rude at all but I really think you are tripping out.
First of all you live in a low risk state.
Second you had Protected sex with a low risk girl.
Unless you are not mentioning something. Your risk was EXTREMLY low.
Practically your risk is non existing.
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replied May 22nd, 2013
Experienced User
Hey man I don't take offense to that....I wish that was true....but my symptoms have been non-stop two weeks after sex with my ex...and pretty much coincide with what everyone else is going through...I know the odds seem very low but I guess i'm that unlucky mofo that had fall in OUCH category....
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replied May 25th, 2013
Extremely eHealthy
Goose,

I've heard from people in Wisconsin and even North Dakota, so that whole low risk state idea is bogus - anyone can catch a disease anywhere (no offense DW).

What was your exposure? Protected, yes, but did any of her fluids touch the tip of your penis? Another member here got infected that way, she removed the condom with a tissue & then dabbed the tip of his penis with the tissue wet with her fluids (yes, it's THAT contagious!). Did you perform oral on her, or vice versa? Yes, this can be transmitted orally, another shocker!

Best wishes.
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replied May 16th, 2013
Experienced User
Did he say what type he had?
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replied May 17th, 2013
Extremely eHealthy
No, I don't recall him mentioning the type.
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replied May 17th, 2013
Experienced User
Google dans life notes mycosis fungoides
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replied May 17th, 2013
Experienced User
Google dans life notes mycosis fungoides
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replied May 17th, 2013
Experienced User
neck = leg
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replied May 17th, 2013
Experienced User
Whoknows,

Yes my palms get red and white blotchy as well. I've noticed my wife's do to. I think it's something to do with the liver. I'm wondering if its Hepatitis. I've read that it's a symptom of Hepatitis C. I'm gonna get tested for it again.
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replied May 17th, 2013
Experienced User
Hey guys,

My wife had some blood work done and one of her liver enzymes was elevated as well the same one as mine the ALT. I'm so worried I know something's wrong.
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replied May 18th, 2013
Extremely eHealthy
Same here Scared - everyone who looks at my test results immediately notices that my liver's being attacked (as if the daily liver pain wasn't proof enough).

Best wishes.
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replied May 17th, 2013
Experienced User
I agree I wanna test for all the heps and syphilis. And maybe hiv.. I get worried all of a sudden.. something is wrong and that's for sure..
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replied May 17th, 2013
Experienced User
I can only get to page 73 if I post a reply
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replied May 18th, 2013
Extremely eHealthy
My hematology visit today was a complete disaster - the hematologist I saw a year ago was at least willing to run tests. Today's hematologist said no new testing, no discussion of HTLV, except to say that the antibody test for HTLV is "very good", he wouldn't even let me leave for him to read the four articles I printed out for him above. Total waste of time and money.

I complained to him THREE TIMES that I have liver pain, I complained that I am in pain all over my body, that I have muscle wasting, and that I have lost weight. NONE of this registered with him at all. I also showed him the lesions that I believe to be Mycosis Fungiodes (skin based leukemia), and his response was NOTHING. What the hell is wrong with these doctors?

When I got up to leave after he told me NOTHING useful, he insisted that his nurse take my blood pressure and pulse and weight. Great, thanks for doing stuff for me that is a complete waste of time and money.

Again Im going to emphasize that you find a hematologist that is a friend of a friend, relative, gay, third world, or crazy, since none of the 'normal' hematologists give a crap.

Best wishes.
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replied May 18th, 2013
Experienced User
Tony
I'm sorry to hear that, i was really hoping he would have useful information for you. I am also upset at how the health authorities are going about all this. It's a total shame.
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replied May 18th, 2013
Extremely eHealthy
DW,

It was downright embarassing the way this guy handled me. I even told him that my sex partner was HTLV positive and it didn't even phase him. We are going to have to go outside the country if we are ever going to get treated. Since Brazil has an HTLV epidemic, perhaps a doctor there who sees people being crippled and killed by HTLV would treat us with (respect and) the Methotrexate approach that Doctor Barasa is using to cure HIV.

Best wishes.
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replied May 18th, 2013
Experienced User
Tony
I wish i had the money for that. Sorry.
Don't feel embarrassed, theese doctors are the ones that should be embarrassed.
They go by the health authorities guidelines. The cdc should be making htlv more public and also encourage advancements in treatment for this.
You would think std clinicians, infectious disease specialists, hematologists, neurologists, rheumatologists, and oncologists would have information for us about this, but they don't.
It's such a shame.
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replied May 18th, 2013
Extremely eHealthy
DW,

Amen - perfectly written.

Best wishes.
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replied May 18th, 2013
Experienced User
Google

Htlv overdiagnosed

Click on the first option. It's a bit interesting.

Also read a bit about Peter north. I wonder if he has htlv but asymptomatic?
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replied May 18th, 2013
Experienced User
I annoys me to hear how your visit to the hermatologist went Tony. Im sorry to hear that you did not get any attention at all.

Doctors are following protocol. They have to. It sucks for us patients, but it is logical in a sense. They see a lot of patients daily, a lot of them don't have anything. Whenever they see a patient, who has had the standard testing done, which came clear, they probably just ''shove'' you to the side of ''no risks/healthy''.

It is hard for them to give everyone the full attention. This is probably because people who are afraid of catching hiv by a toilet seat, think their birthmarks are 100% cancer, feel a bit of pain in their foot, have a headache once in a while etc.

Protocols are killing the ones who really need help. They ignore small odds, because they are not worth the effort. If the chance is 1% that I have htlv, they ignore it, it is not economical to test me for it. Maybe the whole system won't work if they test everyone for the small odds. Either way, it sucks. This is probably what happened to the hiv epidemic, in the beginning they might have just ignored it, up to the point where it could no longer be ignored.

I don't know how to beat this system and give us the attention we need/deserve. Maybe if we all drop dead they will give attention to the ones who follow us, that is not what we want. I advice everybody to be as dominant as possible in their next visit to any dr. who does not seem to care/believe you/etc: don't be passive, don't stop asking, don't stop demanding, don't accept no for an answer, it is your life which might be at stake here. Think about all the cancer patients who stopped demanding/asking/etc, who then later got diagnosed with a ''too late to treat'' diagnosis, and the ones who did not stop asking and then got their treatment at the right time. Pick your side.
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replied May 18th, 2013
Extremely eHealthy
M,

Thank you, and yes, you're right, we need to figure out how to beat the (medical) system. Your point about "too late to treat" is valid too, and everyone should realize that once leukemia settles in, you literally have a few months to live.

And all of us dropping dead won't help neither, since the gang on TheBody site who died ten years ago didn't even make the news. It's like Scared said when we were on the phone, it seems the government knows about this and is letting people die off like thinning a herd of cattle

Best wishes.
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replied May 20th, 2013
Extremely eHealthy
M,

I also like that you compared this to the beginning of the HIV epidemic, that is a very important comparison because of the doctors' attitudes to this new epidemic, i.e. following protocols, pushing patients aside, and most importantly treating SYMPTOMS rather than the underlying disease. This is exactly what happened in the beginning of the HIV epidemic, so many doctors were prescribing Bactrim for PCP pneumonia yet no one could see the bigger picture that the large numbers of people with this disorder were infected with HIV.

Best wishes.
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replied May 18th, 2013
Experienced User
Hey everyone! I've gone through the previous post and realized that we are still between a rock and a hard place. Things are just not getting better for any of us.

For the last few months, i felt far better than the first year of my exposure. The teeth marks are still visible on my tongue, mild skin issues, mild upset stomach and passing stool soon after meal. These were thing that never happened to me prior to my exposure.

My major concern now is my wife's symptoms. She is going through some of the things i went through. I hate to know that she is going through all of this now. She is having serious skin issues that led her to see a dermatologist that ensures her that it's allergies.
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replied May 18th, 2013
Experienced User
Have any of you experienced breakouts on your torso? like little red itchy bumps? this makes me fall back into the HIV line of thinking....
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replied May 18th, 2013
Extremely eHealthy
MGFCG,

I'm glad that you mentioned chest rash - one of my girlfriends got that recently, which reminded me that back in 2010 we were laughing about a hooker in Long Island who walked into a pharmacy and showed the pharmacist her chest rash (and tits), and that a LONG time ago (7 years) someone wrote into Doctor Bob about a chest rash & he replied that there's no way that is HIV.

So bottom line is that this is EVERYWHERE, it's been around longer than HIV (100 vs 100,000 years) and there's MANY people with this (HTLV).

Best wishes.
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replied May 19th, 2013
Experienced User
The crazy thing about it.....this bumps are not on my chest...just on my sides in the same spot on both sides....they are barely visible but when I look close I can see them and I feel them when i scratch the itching....the way I feel i won't make it to the end of this year!!!!!!!!!!!
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replied May 19th, 2013
Experienced User
I have outbreaks on my torso, small (white) bumps. However, they are not itchy.
I have noticed that my broken bloodvessels have been spreading now. They are everywhere, even under my foot. They vary between 0.5mm and 3mm. The skin around them loses it's pigment and just becomes white. My guess is that I now have between 100 and 250 of those spots on my body.

Curious what my dr. will say about them when I meet him next week.
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replied May 19th, 2013
Experienced User
Mine looks like folliculitus I guess...and they are mildly itching....this is incredible......my next appt is in June and i'm curious as well.....
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replied May 19th, 2013
Extremely eHealthy
Guys,

We're dealing with a disease that the doctors don't want to deal with, so what do you expect your doctors to say?

1. Allergies
2. Bacteria
3. Some other crap

There's not a doctor in the world who is going to attribute our skin problems to HTLV. We're treating the symptoms instead of treating the cause.

Best wishes.
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replied May 20th, 2013
Experienced User
I wish there was a test that i could do that would tell me what is happening to me.

My symptoms are real and they are been shown in my wife as well.
Both of us keep gaining weight.
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replied May 20th, 2013
Extremely eHealthy
Ustas,

I agree that there should be a test that would tell you what is going on with you.

I definitely went though a phase when I was gainig weight, the virus interferes with mitochondrial metabolism, I looked and felt like a balloon. That phase ended for me, now it's wasting that's killing me.

As far as testing goes, our best bet might be that test that AdviseMe mentioned, developed in Brazil where HTLV is an epidemic - I believe the company is called Gene ID. If they would let us mail order the test kits so that we can get the tested performed locally that might help us determine if we are HTLV positive. Since HTLV is acknowledge as a real public health threat in Brazil, they are serious about fighting it Same goes for Japan. Sadly, the USA doesn't care about HTLV.

Best wishes.
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replied May 21st, 2013
Experienced User
I understand you 100% me and my girlfriend are going thru the same thing. My exposure was back in Feb 19th 2012 and I'm still dealing with this..

Symtoms now are.
Throat hairball/or something
Joint pain
Muscles are weak
Stomach pain light
GAINED WEIGHT AND CANT LOSE NONE!
I can't excercise like before becuase my legs and hips hurt.
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replied May 21st, 2013
Experienced User
Your symptoms have not changed since Feb 2012? Not for worse or better at all???
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replied May 21st, 2013
Experienced User
Your symptoms have not changed since Feb 2012? Not for worse or better at all???
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replied May 21st, 2013
Experienced User
My symptoms have gotten A LOT BETTER.. but I'm still vety sick..

My whole body used to hurt from my eyes, head , neck , armpits, tingleing and burning arms and hands, very fatigued even with 12hrs of sleep. Folluclitis was crazy and nerve twitches all over body. VERY ABNORMAL poop and very smelly totally not normal looking. this throat thing that has never left me. I could barely finish a day of work. This was all around 5 weeks after exposure.

Now to date.

I deal with this throat thing, heavy mucus in nose
Cold/hot flashes on random parts of body mostly legs feet ankles and arrms wrists andhands and face.
Light follucolitis now and little pimple looking bumps on face.
Muscles are so sensitive so I can't run and hip joints are realy bad with any heavy physical activity.
Light stomach cramps.
Body parts get numb easily

But atleadt now I can work an 11 hr shift and still go to the gym. Even thow I deit and excercise regulary I can lose weight. Sorry if I missed things. But for yhe most part that's it.
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replied May 22nd, 2013
Experienced User
Yes, I know exactly how you feel...this describes me perfectly..the only thing is I also have brutal headaches
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replied May 20th, 2013
Experienced User
Today i called the laboratory that made the htlv pcr that is commercially used in the usa test number 34177 x2.
I asked them what region of the provirus does it detect. they told me its set to detect the gag region, which in my eyes is good because its dependent on only one region, wich if it looked for the pol, gag, env, and tax would mean that one could come positive and the other negative therefore being diagnosed as negative, in short it means that there is a higher chance of being diagnosed as positive when only one region is being looked for.
The sensitivity is
Htlv1 - 500 copies per ml.
Htlv2 - 200 copies per ml.

It doesn't sound bad to me infact i would think it has a shorter window period and maybe even more sensitive than the lips assay.

The downside is that the primers used dont cross react. That is probably why Brasil recomended 2 antibody test, 1 pcr, and 1 WB to exclude infection. Because the grater chance for cross reaction.
My understanding is that the antibody test commercially used in the usa do cross react in fact they cross react with the newly discovered htlv 3/4 only found in camoron Africa. Also the inno lia might have that capability.
Most experts say the window period is the same as for hiv, however there are very knowledgeable experts that state it can often take up to 2 years.
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replied May 21st, 2013
Experienced User
From Wikipedia
Allogenic bone marrow transplantation has been investigated in the treatment of HLTV-1 disease with varied results. One case report describes an HLTV-1 infected woman who developed chronic refractory eczema, corneal injury and adult T cell leukemia. She was subsequently treated with allogenic stem cell transplantion and had complete resolution of symptoms. One year post-transplant, she has had no recurrence of any symptoms, and furthermore has had a decrease in her proviral load.
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replied May 21st, 2013
Experienced User
Human T-lymphotropic virus type 1 (HTLV-1) is associated with adult T-cell leukemia (ATL) and HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) and has also been implicated in several disorders, including periodontal disease. The proviral load is an important biological marker for understanding HTLV-1 pathogenesis and elucidating whether or not the virus is related to the clinical manifestation of the disease. This study describes the oral health profile of HTLV-1 carriers and HAM/TSP patients in order to investigate the association between the proviral load in saliva and the severity of the periodontal disease and to examine virus intra-host variations from peripheral blood mononuclear cells and saliva cells. It is a cross-sectional analytical study of 9 individuals carried out from November 26 to May 28. Of the patients, 6 were HTLV-1 positive and 3 were negative. Individuals from the HTLV-1 positive and negative groups had similar mean age and social-economic status. Data were analyzed using two available statistical software packages, STATA 8. and SPSS 1to conduct frequency analysis. Differences of P<.5 were considered statistically significant. HTLV-1 patients had poorer oral health status when compared to seronegative individuals. A weak positive correlation between blood and saliva proviral loads was observed. The mean values of proviral load in blood and saliva in patients with HAM/TSP was greater than those in HTLV-1 carriers. The HTLV-1 molecular analysis from PBMC and saliva specimens suggests that HTLV-1 in saliva is due to lymphocyte infiltration from peripheral blood. A direct relationship between the proviral load in saliva and oral manifestations was observed.
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replied May 21st, 2013
Experienced User
Human T-cell leukemia virus type-1 (HTLV-1) is the causative retrovirus of adult T-cell leukemia/lymphoma (ATL) and HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). HTLV-1 gene expression is maintained at low levels in vivo by unknown mechanisms.

A combination therapy of interferon-alpha (IFN-alpha) and zidovudin (AZT) shows therapeutic effects in ATL patients, although its mechanism is also obscure. We previously found that viral gene expression in IL-2-dependent HTLV-1-infected T-cells (ILTs) derived from ATL patients was markedly suppressed by stromal cells through a type I IFN response.

Here, we investigated the effects of IFN-alpha with or without AZT on viral gene expression and cell growth in ILTs.

Results: ILTs expressed variable but lower amounts of HTLV-1 Tax protein than HTLV-1-transformed HUT102 cells. Following the addition of IFN-alpha, the amounts of HTLV-1 p19 in the supernatants of these cells decreased in three days, while HTLV-1 gene expression decreased only in ILTs but not HUT102 cells.

IFN-alpha also suppressed the spontaneous HTLV-1 induction in primary ATL cells cultured for 24 h. A time course study using ILTs revealed that the levels of intracellular Tax proteins decreased in the first 24 h after addition of IFN-alpha, before the reduction in HTLV-1 mRNA levels.

The initial decreases of Tax protein following IFN-alpha treatment were observed in 6 of 7 ILT lines tested, although the reduction rates varied among ILT lines. An RNA-dependent protein kinase (PKR)-inhibitor reversed IFN-mediated suppression of Tax in ILTs.

IFN-alpha also induced cell cycle arrest at the G0/G1 phase and suppressed NF-kappaB activities in these cells. AZT alone did not affect HTLV-1 gene expression, cell viability or NF-kappaB activities.

AZT combined with IFN-alpha markedly induced cell apoptosis associated with phosphorylation of p53 and induction of p53-responsive genes in ILTs.

Conclusions: IFN-alpha suppressed HTLV-1 gene expression at least through a PKR-mediated mechanism, and also induced cell cycle arrest in ILTs. In combination with AZT, IFN-alpha further induced p53 signaling and cell apoptosis in these cells.

These findings suggest that HTLV-1-infected cells at an IL-2-dependent stage retain susceptibility to type I IFN-mediated regulation of viral expression, and partly explain how AZT/IFN-alpha produces therapeutic effects in ATL.

Author: Shuichi KinparaMami KijiyamaAyako TakamoriAtsuhiko HasegawaAmane SasadaTakao MasudaYuetsu TanakaAtae UtsunomiyaMari Kannagi
Credits/Source: Retrovirology 2013, 10:52
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replied May 21st, 2013
Experienced User
I can't believe that none of us have tested positive for anything and we all have these sh*tty symptoms for so long..... This may be HTLV, or it may not be...sometimes I feel like we have some new undiscovered virus or condition...or some new version of HIV. I can't believe this sh*t.
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replied May 21st, 2013
Extremely eHealthy
HTLV = Silence
MGFCG,

It's not a new virus, it's HTLV, and it's been around for 100,000 years. The reason that there is NO treatment for it is that NO ONE cares about it, which is the same reason there's no conclusive testing for it. Doctor Gutozzo said that it's so neglected that it's not even on the list of neglected diseases.

When I asked you what you would do if you knew that you definitely had HTLV, you said that you would fight & go to Greece. That's good and all, but if you went to Greece, they would say that they're not treating you until you are near death. Imagine that for moment - not being treated until you are near death. Would they ever say that to someone with HIV? Of course not. But they have said it to people with HTLV and they will say it to you too, so be prepared for the "we monitor people until they die" speech, which came right out of the mouth of my infectious diease doctor, Doctor Soroko. If you don't believe me, message me for her phone number & you can hear it straight from her mouth.

I'm trying to get you to understand that the medical industry in general is going to do NOTHING for us, especially with respect to HTLV. We have to do this for ourselves, we have to all look for one doctor (gay, third world, crazy, or all three) who is will to administer antimetabolites (methotrexate, azacytidine) like Doctor Barasa is doing in Kenya to cure HIV. If we don't find someone willing to do this, we will all be dead in seven years.

While no one can believe this sh*t, it's more important to realize that the medical industry doesn't give a f*ck about us and that the only people who are going to save us from dying is ourselves. Start looking for hematologists willing to treat us.

Best wishes.
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replied May 21st, 2013
Experienced User
Tony,
I'm not scared of dying, I'm scared of getting ham or living in the uncertainty that i might develop ham or ATL, or living a long low quality life and the fact that i would be infectious, is a very scary thought, but i have never read anywhere anybody dying in seven years from htlv.
Maybe the fastest way htlv could kill you after infection would be from bedsores caused by ham. A nother fast way htlv could kill is by developing acute ATL after 20 years these things of course rarely happens.
It's the uncertainty that bothers me the most.
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replied May 21st, 2013
Extremely eHealthy
DW,

No one has done the research to say what how long the AVERAGE person dies from HTLV, nor what the QUICKEST death is from HTLV, nor what the SLOWEST death is from HTLV, so how can you say how long it will take? I'm using REAL examples of REAL people who are dying or already dead from HTLV:

1. Alberto in Italy - 7 years infected - now has mycosis fungoides (Leukemia).

2. A 26 year old woman DEAD on the WiseGeek HTLV page. I'd ask her if she was infected when she was SIX years old, but we already know that's a stupid question.

Since the doctors won't deal with HTLV, we don't know when we are going to die from it. Yes, the fantasy is that you'll live a long & happy life, but we know that these are the same people who are covering up the disease in the first place, so you really can't believe ANYTHING they say.

Best wishes.
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replied May 21st, 2013
Experienced User
Tony
Its hard to know what to believe i agree.
I heard of a man getting ham after 4 years of being infected with htlv1 by his wife that was born with htlv while she was asymptomatic. Also a woman had htlv 2 for 50 years and has never had any major symptoms only minor arthritis symptoms and as you know from your website CONFUSED said that he has never had symptoms and he was most likely around 30 years since he was transfused as a child most likely before blood screening of donated blood.
Reliable information is however EXTREMLY limited.
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replied May 25th, 2013
Extremely eHealthy
Yes, reliable information is EXTREMELY limited, so we have to figure this out for ourselves, no one is going to help us.

This weekend is Memorial Day weekend, where we are supposed to remember the people who have died fighting for our country. I think it's also worth remembering soldiers who have died from HTLV who were stationed in Asia (especially Japan), and also soldiers who have contracted HIV. Those people (and us) did not ask for this disease, did not want this disease, and did our best not to get this disease, yet we have it. And think about all those people who were told that they have HTLV and shown a wheelchair and a hospital bed and told this is what the rest of your life is going to be, not treatment, no cure. Sit in a wheelchair all day & hope that the bed sores don't kill you.

We're going to be dead from this disease if we don't find a doctor willing to listen & treat us, and once we are dead nobody is going to have a Memorial Day for us, just like that gang on TheBody site ten years ago - no news article, no investigation, no research, no medicine, no cure, just a bunch of people who dropped dead without anyone caring. Like Scared, thoughts of violence run through my head, I know that we need to do something big to make this disease known to the rest of the world, I just don't know what it is yet.

Best wishes.
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