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Certain HIV positive, but negative tests (Page 62)

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February 5th, 2013
Hi Everyone,

Firstly thank you all (especially Tony) for the work you are doing regarding this research & fight for acknowledgement & ignorance regarding HTLV.
I found this site after months of devastating stress & anxiety relating to what I thought was a HIV infection. But after numerous tests & at the 4 month window testing negative to all STD's & HIV tests I've realised that HTLV must be the answer to all of my worries & ongoing symptoms.
I had all the classic initial symptoms that led me to believe I had HIV. Now after 6 months post exposure the symptoms I have are swollen lymph nodes of the neck & groin, high WBC, lump in my throat, Candida on the tongue, a yeast infection in the groin area (which I have been treating with a cream) and pins & needles in my hands.

I have made an appointment with an infectious disease doctor two weeks from now on the 26th Feb (the soonest he could see me) where I was going to ask for a PCR & antibody test, but going from all the research I have done & seeing as Tony, you have done numerous ones, all coming back negative, this may very well just be burning money due to the high false negative reports I have seen. I will enquire about a Western Blot test if that is possible instead. Tony have you managed to do a WB test for HTLV? If not is it just not available to you?

Much like most of you, my expose also happened once, I gave oral to a girl for only 15 seconds, had protected sex but here I am, utterly a wreck of a person emotionally. And to top it all off, she was Brazillian, so you can imagine my horror when I discovered where HTLV is epidemic.

I'm going to be honest, I've been in a really dark place the past few months, with thoughts of ending my life seriously coming into play. Thankfully I'm over that now, there are days when I break down but they are becoming few & far between. I just try to enjoy the simple things in life, even though this disease is the last thing I think about at night & the first thing when I wake up. If the symptoms weren't such a reminder of this mistake it would be easier to get on with my life.

And to answer your question Scared49 I'm 29 years old, but don't have any leg/back issues as yet.
Best of luck to all of you. I will update you when I discuss with my doctor regarding testing but am prepared for a huge amount of denial from the doctor.
One other point I should make is I have also been diagnosed with Crohns Disease for 7 years & have never had any of the previous symptoms associated with this autoimmune disease so something is definitely wrong & unrelated to that.

I wish you all the best & thank you for this community you have created for people like us struggling with this disease.
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replied February 6th, 2013
Extremely eHealthy
LICF,

Thanks for your kind words - definitely HTLV is a worldwide problem. Like you, lots of my friends went to Brazil to for sex, and oral was definitely part of what they did. Although I got this from full-on sex with a Puerto Rican, you raise a really important point, that people delude themselves into thinking that oral sex can't transmit retroviruses - you got infected from oral, and I gave it to 2 girls simply via them performing oral on me (without ejaculation).

I can totally relate to your lymph nodes, lump in throat, Candida in the mouth, and yeast infection of the groin, and pins & needles on your hands. What we all need to realize is that the immune suppression by this virus is going to cause systemic problems, i.e. Candida / yeast infections that can occur everywhere, in your mouth (for me), groin (for me resolved with jock itch spray), rectum, penis, digestive tract, etc. The digestive tract Candida infection is where our multi-colored stools come from, along with that annoying clear discharge. The back and leg problems are the worst for me, along with some bladder incontinence, eye floaters, etc.

I don't know how this is going to interact with your Crohn's disease, it might cancel it out, since Crohn's is an overactive immune disorder and this disease is an immune suppressive disorder.

Testing for HTLV is absolute CRAP! AdviseMe has reported on some better testing being developed in Brazil, hopefully we can order that and have it shipped to where we live & get tested for HTLV for REAL for a change.

Im sure we've all thought about how much this has ruined our lives (Im 47), and definitely thoughts of suicide abound, especially because there's NO treatment for this disease, and NO ONE cares that we have it. Even if tomorrow we all tested positive for HTLV, the doctors would still kick us out of their offices.

We're just like the HIV victims in the early 80's, we're completely alone and no one gives a crap about us. We have to come up with our own testing and treatment options since the medical industry has its head up its butt. And we don't have much time, if people like Alberto from Italy can get leukemia in 7 years after being infected (by a Columbian woman), we all can get leukemia. So its either do something about this disease or wait for death & paralysis. Suicide is an option, but if you kill yourself, no one will ever know that this new epidemic exists and that it caused your death, so in that sense Id rather stay alive and keep fighting for recognition of HTLV as the new global epidemic.

Best wishes.
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replied February 8th, 2013
I have been going through very similar symptoms. I don't know what to do. I am so depressed I can barely take care of myself and family. This has been going on so long and have had several hiv tests well past the window period (years) My docs have just been sending me to psych docs and that is of no help at all. What to do??
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replied February 8th, 2013
Extremely eHealthy
Need,

You are NOT crazy, I got the same psychiatric referral from my infectious disease doctor! Scared made a really great point that I had also considered - any doctors who thinks you are crazy should be willing to inject your blood into their body. I know that's extreme, but it draws the line between how convinced they are that you are crazy and how bad this disease actually is.

Best wishes.
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replied February 8th, 2013
I have been going through very similar symptoms. I don't know what to do. I am so depressed I can barely take care of myself and family. This has been going on so long and have had several hiv tests well past the window period (years) My docs have just been sending me to psych docs and that is of no help at all. What to do??
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replied February 8th, 2013
I have been going through very similar symptoms. I don't know what to do. I am so depressed I can barely take care of myself and family. This has been going on so long and have had several hiv tests well past the window period (years) My docs have just been sending me to psych docs and that is of no help at all. What to do??
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replied February 5th, 2013
Experienced User
livingwithconstantfear welcome to the forum. I had the same experience like u after brief protected exposure.
Everyone if you refer back to my psot on the paper normal antibody, western bot and pcr wouldnt diognise htlv infection for sero intermediate cases. There are more reported cases of htlv serointermediate cases in tiwan, japan and brazil. The only test that can detect and confirm infection is LIPS coz it looks for Tax and rex which are viralprotin for HTLV mediated diseases
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replied February 6th, 2013
Thank you adviseme, do you know how rare/easy is it to get this test? I am in Australia so very much doubt it would be available here but I will request it all the same.
My appointment is not for another 2 weeks so I plan to go to it with as much information as possible
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replied February 6th, 2013
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AdviseMe,

I believe that your post said that anti-gag testing in the LIPS test is the most sensitive test. Even people will full blown leukemia (Mycosis Fungiodes) don't test positive for Tax. P24 gag is a protein shared between HTLV & HIV, and used to be a popular test in Europe (called the duo test).

Best wishes.
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replied February 5th, 2013
Experienced User
Hey everyone.. well ima waiting for my GF to get home to take her to the emergency room.. im so scared for her becuase I dont know what we have. And she was already born with LUPUS that affects here immune system so its harder on her.. shes been dealing with really bad headaches and really bad leg joint pains and no menstraul period for like 4 months.. now we are going to go get a ct scan on her head. Becuase last time they saw enlarged glands (tumor) doctor said.. which I seen on the internet its a symtom of Mycoplasma..

Scared49. I have realy bad leg pain exacly like you. And sensitive sore neck and rwally bad skin that starts with red bumps then turns dark and slowly go away til new ones appear.. throat still gots something in there.. I realized it gets worse when I chew gum or drink and energy drink (Redbull or monster)

HAS ANYBODY ON HERE NOTICED STRANGE MARKS? LIKE DARK OR RED STRETCH MARKS? I HAVE RED ONED ON MY LOWER STOMACH AND MY GIRLFRIEND HAS DARK ONES ON LOWER STOMACH AND UNDER BUTT..

I AM 25 YEARS OLD! AND I HAVE NEVER FELT THESE STRANGE SYMPTOMS TIL MY STUPIDD MISTAKE WITH A PROSTITUTE! ON FEB 19TH 2012
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replied February 6th, 2013
Extremely eHealthy
Candida / yeast infection is causing your skin disorders, related to dermatitis seen with HTLV.
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replied February 5th, 2013
Experienced User
D-Man, i think we have the same thing. Looking at your posts we share all the same symptoms. Man what can this be?? My wife as well went 3 months without her period I know I infected her with something just not sure what it could be. This has got to be some kind of retrovirus or bacterial infection.
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replied February 6th, 2013
Experienced User
Dman i have all same problem like u, leg pain, red spots that turn dark and new one appear, blurred vision, dark loose stoole some time different color stooles.pins and needles on body randomly.
Scared i am 31 years old. My exposure was on 18 march 2012.and all my symptoms started 2 days after my exposure.
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replied February 6th, 2013
Extremely eHealthy
AdviseMe,

We all have the same symptoms, whether we want to call it HTLV or something else is a different topic. Like you, my symptoms started right away, none of that "long term" incubation nonsense that's referenced all over the internet.

Best wishes.
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replied February 8th, 2013
Why do you say HTLV test is absolute crap ??? you are just makin people paranoid
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replied February 8th, 2013
Extremely eHealthy
D85,

Because if is WASN'T crap, we'd all have a diagnosis by now. ALL of the doctors and labs and TEST MANUFACTURERS I spoke to have said the SAME THING - there is NO window period for HTLV.

1. So how the hell can you take a test that there's no window period for?

2. Why are newer and better tests coming out if the current tests work fine?

3. Do a search for "undetectable HTLV", you'll see what people all over the world are dealing with this, having EVERY symptom of HTLV without testing positive.

4. I've taken SEVEN tests for HTLV in 15 months, and Rick Sowadsky from TheBody site said it can take YEARS to test positive - well guess what, he's right! He found out because he runs the Nevada State Health department, imagine how much crap he sees in NEVADA!

It's a new strain, and it's killing us all. You can treat the symptoms, but there's no treatment for the virus. We'll all drop dead from non-hodgkins lymphoma one by one in a few years (quicker than HIV patients), just like that group of people on TheBody site. No one gave a crap about that group of people dying, and no one's going to give a crap about our group dying neither.

Like Scared said to me when we spoke on the phone, it's probably the government's way of thinning out the herd. At the very least it's the government saying that everyone who's already dead from HTLV doesn't matter, and we don't matter neither. In Irish there's a saying, "Sinn Fein", translates to "ourselves alone", which is exactly what we are - the saying means that we only have ourselves and the only change that's going to come about is the change that we make, and no one else. The government and doctors just don't care - go to a new doctor tomorrow and tell him that you are positive for HTLV and watch the his reaction - you'll be shown the door.

Best wishes & God bless us.
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replied February 8th, 2013
Experienced User
I really feal that this is a Bacterial Infection! Becuase Viruses dont affect you right after exposure and symptoms go away for periods of time. All of us ha e been suffing with this for 6 month + .. we gotta look at the facts.. peaople with HIV or any other Virus dont even know they have anything til they get sick. Well we got sick right away.. viruses dont do that.. This has to be a Bacterial , Bug , Fungus in our bodys that needs some strong antibiotics. . Please lets stop talking about Viruses. We all tested for hep, hiv, some for htvl and there negative.. we dont need to scare eachother more than we already are..
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replied February 8th, 2013
Experienced User
I really feal that this is a Bacterial Infection! Becuase Viruses dont affect you right after exposure and symptoms go away for periods of time. All of us ha e been suffing with this for 6 month + .. we gotta look at the facts.. peaople with HIV or any other Virus dont even know they have anything til they get sick. Well we got sick right away.. viruses dont do that.. This has to be a Bacterial , Bug , Fungus in our bodys that needs some strong antibiotics. . Please lets stop talking about Viruses. We all tested for hep, hiv, some for htvl and there negative.. we dont need to scare eachother more than we already are..
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replied February 6th, 2013
Experienced User
Dman i have all same problem like u, leg pain, red spots that turn dark and new one appear, blurred vision, dark loose stoole some time different color stooles.pins and needles on body randomly.
Scared i am 31 years old. My exposure was on 18 march 2012.and all my symptoms started 2 days after my exposure.
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replied February 7th, 2013
HTLV?
Hi,

I have receive oral sex from a sex worker and had protected vaginal sex.

the morning after the encounter I started to urinate very often and this continued for some time than stopped for a while than had it again. Now after 14 weeks it is appeased. also 11 weeks after this sad encounter I had for a week 37.2 fever and there is like a white coat on my tongue and a crack in the middle. sometimes it becomes normal. I am a regular smoker 28 years old.

I did all STD testing at 2 months with HIV all negative.
I did at 13 weeks, HIV, HPV, CMV, HSV all negative.

I am planning to get tested for HTLV at 20 weeks. In case these symptoms can be related to HTLV a test a that period should detect it right?

Please help!
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replied February 8th, 2013
Extremely eHealthy
Did you consider the viruses called Parvo, JC, or EBV? I got the last two from receiving oral sex like you.

Best wishes.
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replied February 8th, 2013
for EBV

Most people become infected with EBV and gain adaptive immunity. In the United States, about half of all five-year-old children and 90 to 95 percent of adults have evidence of previous infection

http://en.wikipedia.org/wiki/Epstein%E2%80 %93Barr_virus
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replied February 8th, 2013
Extremely eHealthy
Correction - I meant that I got EBV & HHV8 from receiving oral sex.
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replied February 10th, 2013
I find really funny such mistake in saying what you had. these are very specific diseases. you don't have anything else except scaring people lol. any other diseases that we should note?
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replied February 11th, 2013
Extremely eHealthy
Sorry, but I don't see the humor in any of this suffering - is this your idea of a joke? Yes, these are really specific diseases, because you are asking me for REALLY SPECIFIC DISEASES!!! What's your problem?
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replied February 7th, 2013
Experienced User
Hey guys, I'm going to see a Laryngologist at Shands Hospital tomorrow my ENT Dr. referred me there to try and figure out all these throat issues I've been having. It's supposed to be a top notch facility so we'll see what happens. Ill let you guys know anything I figure out.

Good luck everyone.
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replied February 8th, 2013
Extremely eHealthy
Scared,

If you can, please explain that we're all having lumpy feeling in our throats that is like the wasting we are all feeling in our shoulders and hips. If somehow that wasting in your throat can be measured, that would be progress.

Best wishe & good luck.
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replied February 8th, 2013
Experienced User
Its not about getting people paranoid but to create awarness as to how little is been done on htlv reaserch past 35years.forget about treatment there isint any confirmed window period or gold std test to rule out infection. Everything is swept under the rug.
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replied February 8th, 2013
Experienced User
I really feal that this is a Bacterial Infection! Becuase Viruses dont affect you right after exposure and symptoms go away for periods of time. All of us ha e been suffing with this for 6 month + .. we gotta look at the facts.. peaople with HIV or any other Virus dont even know they have anything til they get sick. Well we got sick right away.. viruses dont do that.. This has to be a Bacterial , Bug , Fungus in our bodys that needs some strong antibiotics. . Please lets stop talking about Viruses. We all tested for hep, hiv, some for htvl and there negative.. we dont need to scare eachother more than we already are..
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replied February 8th, 2013
Experienced User
I really feal that this is a Bacterial Infection! Becuase Viruses dont affect you right after exposure and symptoms go away for periods of time. All of us ha e been suffing with this for 6 month + .. we gotta look at the facts.. peaople with HIV or any other Virus dont even know they have anything til they get sick. Well we got sick right away.. viruses dont do that.. This has to be a Bacterial , Bug , Fungus in our bodys that needs some strong antibiotics. . Please lets stop talking about Viruses. We all tested for hep, hiv, some for htvl and there negative.. we dont need to scare eachother more than we already are..
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replied February 10th, 2013
Well said
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replied February 8th, 2013
Experienced User
Depressed-It is not about making people paranoid, there is neglection on every aspect of this disease, Right from diognais ,treatment to awarness. If you read my post above or even google your self there isint any test till date which guarentees no infection after their negative test result. Any test to that matter EIA, Elisa, Western Bolt, PCR from any provider MP biomedical Arup lab all FDA approved. Secoundly there is not treatment to htlv mediated diseases.
Healthy , well doing people like me and others in this forum, got sick all off a sudden after brief protected sexual exposure and have all textbook symptoms of viru HTLV virus but still test negative.This is called serointermediate.If you read my post above you will come across the inefficences of their diognestic reaserch. Also there isint any confirmed window period for htlv

To add up how many people in this world know about HTLV1 & 2 virus and HIV was previously called as HTLV3. i myself wasen't aware that there was this HTLV virus until i came across this forum and start reaserching what is causing me all my problems.
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replied February 8th, 2013
Experienced User
Dont let the Htvl threads scare you.
I really feal that this is a Bacterial Infection! Becuase Viruses dont affect you right after exposure and symptoms go away for periods of time. All of us ha e been suffing with this for 6 month + .. we gotta look at the facts.. peaople with HIV or any other Virus dont even know they have anything til they get sick. Well we got sick right away.. viruses dont do that.. This has to be a Bacterial , Bug , Fungus in our bodys that needs some strong antibiotics. . Please lets stop talking about Viruses. We all tested for hep, hiv, some for htvl and there negative.. we dont need to scare eachother more than we already are..
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replied February 10th, 2013
Extremely eHealthy
D-man,

You're entitled to your opinion, but until you come up with a better explanation, let the rest of us have our opinion too. The 25 million people who have HTLV aren't going to agree with your fungus theory. Sure, people with HTLV will get fungal infections because their immune system is wrecked by HTLV. In the early days of HIV, they were treating HIV related pneumonia the same way. But hey, let's treat the symptoms and not the actual problem - we all should be able to get really good life insurance policies before we die.
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replied February 8th, 2013
Experienced User
I really feal that this is a Bacterial Infection! Becuase Viruses dont affect you right after exposure and symptoms go away for periods of time. All of us ha e been suffing with this for 6 month + .. we gotta look at the facts.. peaople with HIV or any other Virus dont even know they have anything til they get sick. Well we got sick right away.. viruses dont do that.. This has to be a Bacterial , Bug , Fungus in our bodys that needs some strong antibiotics. . Please lets stop talking about Viruses. We all tested for hep, hiv, some for htvl and there negative.. we dont need to scare eachother more than we already are..
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replied February 8th, 2013
You bring all kind of viruses and diseases you are just scaring people. only a doctor should make a diagnose. you are also putting into questions Lab tests. wow really


for JC see this http://www.ninds.nih.gov/disorders/pml/pml .htm


for pravo:

Infection with parvovirus B19 is very common. About 60% of adults worldwide have B19 antibodies in their bloodstream, indicating they had past infection and are now immune. The virus is spread via the respiratory route or via blood and blood products (transfusions, etc.). It can cause a variety of clinical conditions. Normal children with parvo B19 get Erythema Infectiosum, also called Fifth Disease or Slapped-Cheek Syndrome. Normal adults can develop polyarthropathy, which is what you most likely are experiencing. I'll get back to that in a moment. HIV+ folks can develop persistent, very severe anemia. A fetus can develop congenital anemia ("Hydrops Fetalis") in the uterus. There are other more rare conditions involving the heart and liver as well. So what do you have? Adult women are most likely to experience symmetrical pain in joints. The small joints of the hands and feet are primarily involved with swelling and stiffness. Joint symptoms usually last 1 to 3 weeks, although in about 20 percent of affected women, joint pain and inflammation can persist or recur for up to 2 years. Treatment? The majority of cases are quite benign and self-limited. Certainly non-steroidal anti-inflammatory drugs, like aspirin or Advil, can be helpful for discomfort. The other recommended treatment is IVIG (intravenous gamma globulin). Patients with normal immune systems usually recover quite quickly and completely. Patients with immunodeficiency (such as AIDS) may require repeated or even regular (every month) infusions of IVIG to suppress the parvovirus B19 infection.
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replied February 11th, 2013
Extremely eHealthy
I am bringing up all kinds of viruses and disease because people are asking for answers - that's why we are here. Did you confuse this forum with the tennis forum? What is it that you want?
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replied February 8th, 2013
Extremely eHealthy
AdviseMe,

I totally agree - everyday I ask myself how in God's name the medical authorities could have hid this disease from ALL of us for the past 33 years. Most of the people in this forum didn't even hear about HTLV until I mentioned it. Derrick on the HTLVhelp page is crippled with HTLV from installing (bathroom) floors. How screwed up is that for a guy who's married with kids gets to get infected (and crippled) by HTLV from installing floors!?!?! If you think that we are living in a nightmare, imagine him - at least I got it from sex with someone very scummy, this poor guy was just doing his job!

Best wishes.
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replied February 8th, 2013
Extremely eHealthy
AdviseMe,

I totally agree - everyday I ask myself how in God's name the medical authorities could have hid this disease from ALL of us for the past 33 years. Most of the people in this forum didn't even hear about HTLV until I mentioned it. Derrick on the HTLVhelp page is crippled with HTLV from installing (bathroom) floors. How screwed up is that for a guy who's married with kids gets to get infected (and crippled) by HTLV from installing floors!?!?! If you think that we are living in a nightmare, imagine him - at least I got it from sex with someone very scummy, this poor guy was just doing his job!

Best wishes.
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replied February 9th, 2013
Extremely eHealthy
D-man,

I understand your frustration and desperation, we are all feeling the same way and are in the same nightmare! There's not a day I don't regret what I did on November 6, 2011. Most of us are suffering with this for over a year, some even for multiple years (DFrank). There's also not a day that I don't curse the medical authorities for not warning us about this - how could they keep this from us as a society for 33 years?

My body hurts so much, and what's worse is that I know this thing is going to kill me. This isn't herpes where you have a rash now and then, this is a disease that wrecks your immune system and causes leukemia and death. Even the lucky victims get to spend the rest of their life in a wheelchair - what kind of crap is that? My point is that focusing on the symptoms is small potatoes compared to the big concerns - death from leukemia and paralysis from HAM (HTLV associated myelopathy) are the major concerns.

Like HIV, HTLV can causes menstrual problems for women. I know because I infected women after the doctor gave me the "you're crazy" diagnosis - yet another dereliction of the medical industry's duty - telling someone who is clearly sick that he is fine, so other people can get infected too.

Obviously AdviseMe & myself know this is HTLV - it has all of the symptoms. The fact that symptoms started for us right away has nothing to do with it being a virus or not a virus. Sorry, but the post that said all viral infections don't show right away is wrong - every virus behaves differently in everyone's body, e.g. people can be dead from Ebola in days.

We can use this forum (Im surprised that the 176 pages of entries haven't been deleted by the "authorities") as long as they'll let us, and we can post complaints about our symptoms and possible diagnoses. BUT it's not going to change the fact that we have this and it's not going away. So I am asking for all of you to consider what we should really do to get this disease further down the road. I started HTLV related petitions on SignOn.Org that couldn't even reach 50 signatures. I started the HTLVhelp site with the same hope. Same for the HTLVhelp face book page. None of those efforts have gone anywhere - I understand that some of you are still in shock and denial about this. However, if 100 percent of us don't push for HTLV to be recognized as a disease, all of my efforts / money spent will die on the vine.

I really need all of you to sign the petitions on SignOn dot Org AND to get your friends to do the same. I really need all of you to use the forum on HTLVhelp dot com or HTLVhelp on face book if they pull the plug on the enormous forum we've created here. Otherwise what's the point of us logging in everyday complaining about our symptoms? Don't all of you want to be recognized as having this disease? Don't all of you want accurate testing? Don't all of you want to be treated? Don't all of you want to be cured? I already know the answers to all of these questions is an emphatic yes, so let's consider moving forward with this, otherwise we're just a bunch of people complaining on the internet while waiting for death to come for us. Each of us needs to be an advocate for this disease, it's what it will take for us & this disease to stop being ignored and start being dealt with.

Advocacy is just part of the effort - we also need to start taking medications to see what will stop this disease. So far my research has turned up two different medications - Azacytidine (Vidaza) and Tofacitinib (Xeljanz). Vidaza would require a sympathetic hematologist, and Xeljanz would require a sympathetic rheumatologist. By sympathetic, I mean that the doctor would have to care about you enough to not give you the "crazy" label and prescribe the drug to see if it resolves the disease. So start networking to see if you can find friends of friends / friends of relatives / ANYONE willing to give you either of these. These drugs are very expensive, but so is your death and your funeral.

Those of us who have good medical insurance (Scared, DFrank) are in the best position to try these drugs. Im going to see if I can get an appointment with a local rheumatologist so I can try Xeljanz - Im not saying it will be a cure, but the pain is so bad as I am typing this post that I want to kill myself just to end the misery. Anyone who can get Vidaza to treat HTLV is literally walking on the moon, since it did cure a patient in Greece after 8 months. Imagine being cured of this horrible disease after 8 months of Vidaza, AND being only the SECOND person EVER in history to have received this treatment? Wouldn't that be a fine day! If we don't start taking treatments for this disease, we're going to eventually die. Look at Alberto in Italy, he's got leukemia from HTLV in only 7 years - how will I even know if he's dead? Im sorry for playing the death card, but we have to snap out of the rashes and soreness complaints and ask ourselves "do you want to die?". After you answer that question, I want you to commit yourself to being an advocate for the disease and a test patient for the drugs that I mentioned - I can't do this by myself! Otherwise our lives and our suffering and our deaths will have meant NOTHING, and will be completely covered up by the authorities. Is that how any of you want to leave this world? Another "mysterious" death by sepsis, like what happened to Doctor Bob? Imagine the irony of one of the greatest HIV advocates (and a doctor, and partnered with a doctor) in history dying from sepsis and they STILL can't accept that he had HTLV AND that it killed him - there is nothing more insane in this world than what happened to Doctor Bob and how it was so poorly handled. Doctor Bob is us, and we are Doctor Bob - we don't have HIV, but we do have what killed him. His death alone should be enough reason for us to get this disease out into the light.

Please be honest with me about your feelings - would the embarrassment of having HTLV stop you from being an advocate or test patient? I really want to understand why all of my efforts to galvanize us towards recognition and treatment of HTLV have failed.

AdviseMe, you make an excellent point, most people never even heard of HTLV until I mentioned it on this forum. Furthermore, your point about HIV originally being called HTLV-3 proves that HTLV was recognized BEFORE there was the term HIV even existed.

Best wishes.
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replied February 9th, 2013
Extremely eHealthy
D-man,

I understand your frustration and desperation, we are all feeling the same way and are in the same nightmare! There's not a day I don't regret what I did on November 6, 2011. Most of us are suffering with this for over a year, some even for multiple years (DFrank). There's also not a day that I don't curse the medical authorities for not warning us about this - how could they keep this from us as a society for 33 years?

My body hurts so much, and what's worse is that I know this thing is going to kill me. This isn't herpes where you have a rash now and then, this is a disease that wrecks your immune system and causes leukemia and death. Even the lucky victims get to spend the rest of their life in a wheelchair - what kind of crap is that? My point is that focusing on the symptoms is small potatoes compared to the big concerns - death from leukemia and paralysis from HAM (HTLV associated myelopathy) are the major concerns.

Like HIV, HTLV can causes menstrual problems for women. I know because I infected women after the doctor gave me the "you're crazy" diagnosis - yet another dereliction of the medical industry's duty - telling someone who is clearly sick that he is fine, so other people can get infected too.

Obviously AdviseMe & myself know this is HTLV - it has all of the symptoms. The fact that symptoms started for us right away has nothing to do with it being a virus or not a virus. Sorry, but the post that said all viral infections don't show right away is wrong - every virus behaves differently in everyone's body, e.g. people can be dead from Ebola in days.

We can use this forum (Im surprised that the 176 pages of entries haven't been deleted by the "authorities") as long as they'll let us, and we can post complaints about our symptoms and possible diagnoses. BUT it's not going to change the fact that we have this and it's not going away. So I am asking for all of you to consider what we should really do to get this disease further down the road. I started HTLV related petitions on SignOn.Org that couldn't even reach 50 signatures. I started the HTLVhelp site with the same hope. Same for the HTLVhelp face book page. None of those efforts have gone anywhere - I understand that some of you are still in shock and denial about this. However, if 100 percent of us don't push for HTLV to be recognized as a disease, all of my efforts / money spent will die on the vine.

I really need all of you to sign the petitions on SignOn dot Org AND to get your friends to do the same. I really need all of you to use the forum on HTLVhelp dot com or HTLVhelp on face book if they pull the plug on the enormous forum we've created here. Otherwise what's the point of us logging in everyday complaining about our symptoms? Don't all of you want to be recognized as having this disease? Don't all of you want accurate testing? Don't all of you want to be treated? Don't all of you want to be cured? I already know the answers to all of these questions is an emphatic yes, so let's consider moving forward with this, otherwise we're just a bunch of people complaining on the internet while waiting for death to come for us. Each of us needs to be an advocate for this disease, it's what it will take for us & this disease to stop being ignored and start being dealt with.

Advocacy is just part of the effort - we also need to start taking medications to see what will stop this disease. So far my research has turned up two different medications - Azacytidine (Vidaza) and Tofacitinib (Xeljanz). Vidaza would require a sympathetic hematologist, and Xeljanz would require a sympathetic rheumatologist. By sympathetic, I mean that the doctor would have to care about you enough to not give you the "crazy" label and prescribe the drug to see if it resolves the disease. So start networking to see if you can find friends of friends / friends of relatives / ANYONE willing to give you either of these. These drugs are very expensive, but so is your death and your funeral.

Those of us who have good medical insurance (Scared, DFrank) are in the best position to try these drugs. Im going to see if I can get an appointment with a local rheumatologist so I can try Xeljanz - Im not saying it will be a cure, but the pain is so bad as I am typing this post that I want to kill myself just to end the misery. Anyone who can get Vidaza to treat HTLV is literally walking on the moon, since it did cure a patient in Greece after 8 months. Imagine being cured of this horrible disease after 8 months of Vidaza, AND being only the SECOND person EVER in history to have received this treatment? Wouldn't that be a fine day! If we don't start taking treatments for this disease, we're going to eventually die. Look at Alberto in Italy, he's got leukemia from HTLV in only 7 years - how will I even know if he's dead? Im sorry for playing the death card, but we have to snap out of the rashes and soreness complaints and ask ourselves "do you want to die?". After you answer that question, I want you to commit yourself to being an advocate for the disease and a test patient for the drugs that I mentioned - I can't do this by myself! Otherwise our lives and our suffering and our deaths will have meant NOTHING, and will be completely covered up by the authorities. Is that how any of you want to leave this world? Another "mysterious" death by sepsis, like what happened to Doctor Bob? Imagine the irony of one of the greatest HIV advocates (and a doctor, and partnered with a doctor) in history dying from sepsis and they STILL can't accept that he had HTLV AND that it killed him - there is nothing more insane in this world than what happened to Doctor Bob and how it was so poorly handled. Doctor Bob is us, and we are Doctor Bob - we don't have HIV, but we do have what killed him. His death alone should be enough reason for us to get this disease out into the light.

Please be honest with me about your feelings - would the embarrassment of having HTLV stop you from being an advocate or test patient? I really want to understand why all of my efforts to galvanize us towards recognition and treatment of HTLV have failed.

AdviseMe, you make an excellent point, most people never even heard of HTLV until I mentioned it on this forum. Furthermore, your point about HIV originally being called HTLV-3 proves that HTLV was recognized BEFORE there was the term HIV even existed.

Best wishes.
|
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User Profile
replied February 9th, 2013
Extremely eHealthy
D-man,

I understand your frustration and desperation, we are all feeling the same way and are in the same nightmare! There's not a day I don't regret what I did on November 6, 2011. Most of us are suffering with this for over a year, some even for multiple years (DFrank). There's also not a day that I don't curse the medical authorities for not warning us about this - how could they keep this from us as a society for 33 years?

My body hurts so much, and what's worse is that I know this thing is going to kill me. This isn't herpes where you have a rash now and then, this is a disease that wrecks your immune system and causes leukemia and death. Even the lucky victims get to spend the rest of their life in a wheelchair - what kind of crap is that? My point is that focusing on the symptoms is small potatoes compared to the big concerns - death from leukemia and paralysis from HAM (HTLV associated myelopathy) are the major concerns.

Like HIV, HTLV can causes menstrual problems for women. I know because I infected women after the doctor gave me the "you're crazy" diagnosis - yet another dereliction of the medical industry's duty - telling someone who is clearly sick that he is fine, so other people can get infected too.

Obviously AdviseMe & myself know this is HTLV - it has all of the symptoms. The fact that symptoms started for us right away has nothing to do with it being a virus or not a virus. Sorry, but the post that said all viral infections don't show right away is wrong - every virus behaves differently in everyone's body, e.g. people can be dead from Ebola in days.

We can use this forum (Im surprised that the 176 pages of entries haven't been deleted by the "authorities") as long as they'll let us, and we can post complaints about our symptoms and possible diagnoses. BUT it's not going to change the fact that we have this and it's not going away. So I am asking for all of you to consider what we should really do to get this disease further down the road. I started HTLV related petitions on SignOn.Org that couldn't even reach 50 signatures. I started the HTLVhelp site with the same hope. Same for the HTLVhelp face book page. None of those efforts have gone anywhere - I understand that some of you are still in shock and denial about this. However, if 100 percent of us don't push for HTLV to be recognized as a disease, all of my efforts / money spent will die on the vine.

I really need all of you to sign the petitions on SignOn dot Org AND to get your friends to do the same. I really need all of you to use the forum on HTLVhelp dot com or HTLVhelp on face book if they pull the plug on the enormous forum we've created here. Otherwise what's the point of us logging in everyday complaining about our symptoms? Don't all of you want to be recognized as having this disease? Don't all of you want accurate testing? Don't all of you want to be treated? Don't all of you want to be cured? I already know the answers to all of these questions is an emphatic yes, so let's consider moving forward with this, otherwise we're just a bunch of people complaining on the internet while waiting for death to come for us. Each of us needs to be an advocate for this disease, it's what it will take for us & this disease to stop being ignored and start being dealt with.

Advocacy is just part of the effort - we also need to start taking medications to see what will stop this disease. So far my research has turned up two different medications - Azacytidine (Vidaza) and Tofacitinib (Xeljanz). Vidaza would require a sympathetic hematologist, and Xeljanz would require a sympathetic rheumatologist. By sympathetic, I mean that the doctor would have to care about you enough to not give you the "crazy" label and prescribe the drug to see if it resolves the disease. So start networking to see if you can find friends of friends / friends of relatives / ANYONE willing to give you either of these. These drugs are very expensive, but so is your death and your funeral.

Those of us who have good medical insurance (Scared, DFrank) are in the best position to try these drugs. Im going to see if I can get an appointment with a local rheumatologist so I can try Xeljanz - Im not saying it will be a cure, but the pain is so bad as I am typing this post that I want to kill myself just to end the misery. Anyone who can get Vidaza to treat HTLV is literally walking on the moon, since it did cure a patient in Greece after 8 months. Imagine being cured of this horrible disease after 8 months of Vidaza, AND being only the SECOND person EVER in history to have received this treatment? Wouldn't that be a fine day! If we don't start taking treatments for this disease, we're going to eventually die. Look at Alberto in Italy, he's got leukemia from HTLV in only 7 years - how will I even know if he's dead? Im sorry for playing the death card, but we have to snap out of the rashes and soreness complaints and ask ourselves "do you want to die?". After you answer that question, I want you to commit yourself to being an advocate for the disease and a test patient for the drugs that I mentioned - I can't do this by myself! Otherwise our lives and our suffering and our deaths will have meant NOTHING, and will be completely covered up by the authorities. Is that how any of you want to leave this world? Another "mysterious" death by sepsis, like what happened to Doctor Bob? Imagine the irony of one of the greatest HIV advocates (and a doctor, and partnered with a doctor) in history dying from sepsis and they STILL can't accept that he had HTLV AND that it killed him - there is nothing more insane in this world than what happened to Doctor Bob and how it was so poorly handled. Doctor Bob is us, and we are Doctor Bob - we don't have HIV, but we do have what killed him. His death alone should be enough reason for us to get this disease out into the light.

Please be honest with me about your feelings - would the embarrassment of having HTLV stop you from being an advocate or test patient? I really want to understand why all of my efforts to galvanize us towards recognition and treatment of HTLV have failed.

AdviseMe, you make an excellent point, most people never even heard of HTLV until I mentioned it on this forum. Furthermore, your point about HIV originally being called HTLV-3 proves that HTLV was recognized BEFORE there was the term HIV even existed.

Best wishes.
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