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Certain HIV positive, but negative tests (Page 42)

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August 5th, 2012
Experienced User
HTLV reaserch is a joke
Hi Every one, Sorry i havent been active on this site past few weeks. I still have weakness, skin pealing on my palm, back pain and neurological problem.
Hope every one is keeping well.
Tony i do not agree with your comment that less than 5% of people suffer with this disease.Also did u not say those girls who engaged with you were complaining about similar symptoms within few weeks?
This is false information being spread by medical agencies about this disease for years together to hide their faliure on HTLV reaserch. The fact is that HTLV reaserch scientist still get fustrated with the complex genome of this viruse. HTLV Reaserch is an eyewash, hence HTLV reaserch havent made basic progress on this HTLV virus even after entering its 3rd decade of reaserch.
HTLV reaserch is a joke from scientists and medical agencies.
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replied August 5th, 2012
Extremely eHealthy
AdviseMe,

I am in complete agreement with you, however I was trying to make the point to Dalton that even if we go along with the 5 percent figure that he suggested, then it's still possible that we are THAT five percent! Yes, the people that I've infected are dealing with this by NOT dealing with it, meaning that they are pretending not to be sick, but I see it looking at them, seeing them sleep 20 hours a day, their joints are sore and swollen, etc. I am only one who has sought medical help; some of them will stop having sex, but at least a handful will continue to have unprotected sex. When I think about the sheer numbers of people that are going to be infected as a result, it's a bit mind blowing. Because this disease is being treated as a joke and not being addressed like Polio (which causes paralysis) and HIV (which causes cancer), I really do feel that we are in deep trouble. My dream is that someday we can receive the azacytidine and / or hyperthermia treatments that supposedly cure this disease. But for now we're just suffering and that's unbelievably sad. If you visit the face book page for HTLVhelp, you will see that one guy (Derrick) is crippled from HTLV and one lady (Effie) has lymphoma from HTLV. These are real people who even at this severe stage of HTLV cannot get HTLV treated, and that's the worst failure of the medical establishment. I really wish that the media would bring attention to this terrible injustice.

Best wishes.
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replied August 5th, 2012
Experienced User
I know I have a lot of problems walking now, cause I have red sores on my feet. This sucks. I also have a rash that I've had for about a couple of weeks now or longer, it's on the lower part of my stomache where my pubs are. The news isn't gonna be good at all. I can just feel it
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replied August 6th, 2012
Tony & dfrank from last 7 month I am in hell, my symptoms start after 10 days of my risk, I had sex with CSW that was protected but she put the condom on me, but before putting condom on me, she rubbed my pennies with her virgina every one says it's no rush for HIV no one can get HIV with foreplay HIV virus is fragile and die when expos to air but what's about htlv is HTLV is same or can survive in air for long time as like HCV ?
After 7 month still my skin is so sensitive if I touch it little bit or rub towel it's get red raised and bumpy, and then disappear after 25-30 minutes, I am also getting shingles on my arms or some time on shoulders or shoulders but it does not stay long and disappear after 30 minutes, and off course I still have oral thursh and swear pain in my thighs and legs even with this pain I can not sleep at night time, I am thinking PCR test for HIV & for HTLV too, what you suggest for me, do you think I still need to worry for HIV after 24 negative results , is any one turn positive after 7 month HIV negative?
I m too stress today I had and have lymph node from last 6 month and I read this is a solid sign of infection and I am 99.9 % sure I have some infection which is killing me, but no Dr belive me, they think I am mad, but I am not but if I keep getting symptoms with no dignose I might become mad soon, plz advise me which PCR test I do for HIV now?
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replied August 6th, 2012
Experienced User
BIONOZ HAM/TSP
Hi All there is some bit of a good news with HAM /TSP.
A biomedical company called Bioniz is working on immunesupression drug to treat HAM TSP.
Their Approch is to block the cytokines that are critical in this disease.Hope they get this very soon to trial.

Their site reads as follows.
HAM/TSP is a significant unmet medical need as currently, there is no FDA approved therapeutic for this disease. However, since the continuous activated immune response has been recognized as a culprit in the pathogenesis of this disease, immuno-modulation is considered a rationale therapeutic strategy for this disease. Many publications support the pathogenic role of inflammatory cytokines in HAM/TSP[6-8]. Monoclonal antibodies against any of the inflammatory cytokines or their receptors will theoretically be of value in treating this disease. However, an effective treatment requires simultaneous blockade of more than one inflammatory cytokine. The limitation of multiple monoclonal antibody therapy is the cost of the treatment and its burden on patients. As an alternative strategy, Bioniz technology can simultaneously block the cytokines that are critical in this disease, replacing the need for multiple monoclonal antibody therapies. Bioniz lead peptide, BNZ-, selectively inhibits IL-2, IL-9, and IL-15; three cytokines which are culprits of HAM/TSP pathogenesis.

An effective therapeutic agent for HAM/TSP will provide proof of concept in modulating the immune response, a characteristic that be of value in treating other immune-mediated diseases. Etiology of HAM/TSP is dependent on an ongoing immune response to viral proteins that are continuously presented to the immune system. Therefore, this disease shares similarities with other autoimmune disorders where autoantigens continuously activate the immune system. A therapy effective for HAM/TSP is highly likely to be effective in treating other autoimmune conditions such as MS
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replied August 6th, 2012
Extremely eHealthy
No more HIV testing please!
One,

Please no more tests for HIV - 24 negative HIV results is already too much testing. You do not have HIV, none of us have HIV, we've all tested too much for HIV. To quote Ustas, either be happy that you don't have HIV or look for other diseases. Many of us got sick in a similar manner to you, such as a simple touch of a napkin to our muscous membranes. Recall I got two girls sick just by blowing me without me ejaculating. A third girl I infected the same way you described, so this disease (whatever it is) is VERY infectious, unlike what is classically described for HTLV. Also, antibody develop is not the classical HTLV antibody period for HTLV. Such HTLV variants are referred to as "defective", meaning that they have a slightly different structure from classical HTLV, but still cause paralysis and leukemia.

AdviseMe,

Thanks for the great news on HAM treatment developments; when the drug companies realize the millions of people who need effective HAM & ATL treatments, hopefully the researchers and doctors will treat HTLV like a real disease instead of a joke. I am going to post your article on the HTLVhelp page on face book so other HAM sufferers can have hope to walk again.

To follow up on the BNZ-y treatment by Bioniz, apparently the owners of the company are pursuing the treatment of HAM/TSP since it is a "orphan" disorder, meaning that NO current treatment exists, which allows for accelerated approval / reduced approval costs. I wrote the company a note complimenting their effort to treat HAM/TSP. Anytime a researcher attempts to develop treatments for HTLV and its terrible consequences, we need to provide support and encouragement, otherwise the assumption will be that no one needs treatment

Best wishes.
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replied August 7th, 2012
Experienced User
Tony, I am sure reaserchers are awarte of 35mm people infected with this disease and how much of a value this treatment will be.
I am posting this on HTLV Brazil, Japan and Iran site as well so that more people are made aware of this novel hope for their disease.
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replied August 7th, 2012
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AdviseMe,

In my opinion, the biggest problem with HTLV is that no awareness or advocacy campaign exists for it. None of us knew what HTLV was before I mentioned it. And to have doctors in my local medical community say that they don't know what it is is even scarier. The worst example is when Dr. Jay (top AIDS researcher) said that he never heard that millions of people are infected with HTLV - that's when I realized that the problem with HTLV is huge ignorance and we will never move towards treatments or cures until we make everyone aware that HTLV exists and is real and can cripple and kill people. I worry about Alberto and his wife & young daughter suffering with this, his doctors told him that he was crazy before he got married and had a daughter. I worry about young children in Jamaica suffering with this because their mothers were infected and passed the virus to them because no antiviral drugs or prenatal care exist to prevent HTLV.

Best wishes.
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replied August 7th, 2012
Experienced User
I agree with u tony htlv is a global problem and you brought awarenes to this forum. Hopefully we get more support , awareness and serious reaserch to htlv virus.
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replied August 8th, 2012
Tony & dfrank I have very bad upper legs pain, no energy to walk, white tong with oral thursh, please tell me when you guys symptoms start my start after 10 days I am getting easy bruses on my skin & some time shingles rash too, I had a very swear pain in my eyes for more then a month.
My wife is angery she think I am fine, bcoz Dr . Says I am ok, she want another baby but I am worried for her and the baby I already have, I do not want to take any risk for her but she do not belive I have any problem she think all problems are because of stress.
Now I do not know what should I do, I am going to do PCR test tomorrow for HTLV1/2 plz pray for me, even I know there is something wrong with me, God bless you all
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replied August 8th, 2012
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One,

We are all suffering to greater or lesser extent than what you described. My symptoms have subsided greatly from when I was first sick thank God - yesterday was nine months for me. I'd like to think / hope / pray that two years from now I will have improved as much as DFrank, where I am able to walk & run freely again. Right now my only problem is lower back pain & trouble walking. That sounds bad but wasn't as bad as my entire body hurting for six months, along with giant abscesses on my face and leg. The pain was so bad that I couldn't even lay on my side when sleeping, and now when I do that I am shocked that the pain isn't there anymore.

The reason that I'm presenting this as "not so bad" is that we all know that we have caught some type of disease, a disease that is chronic and long term. None of us want to end up dead or in a wheelchair because of this, but the reality is that we have it and we have to learn to live with it. DFrank's diet and my supplements might help you feel better, but you won't know until you try. Clearly we all need to begin the healing process, and we have to look to people like DFrank who have had this for years for hope of how well we might heal in the future.

I understand your point about convincing others that you are sick, but again without a positive test for anything, no one's going to believe you. Yesterday I got an email from one girlfriend yesterday who wants me to see a psychiatrist and go on anti-depressant drugs - what good will that do?

Same goes for testing - let's say that we are dealing with a defective version of HTLV that's not going to show up on testing for years (or never). I've read articles on the web where people test negative for HTLV on ELISA tests, AND Western Blot tests, AND pcr tests, but still have it. How are any of us going to convince our sex partners that we have something without a positive test?

Here's an excerpt from a medical research paper describing the difficulty in diagnosing HTLV in people with HAM/TSP, and it suggests "repeated PCR" testing:

Ramirez et al studied 15 HTLV-I seronegative TSP patients from Chile. Clinically 8 patients presented paraparesis with spasticity, hyperreflexia, bilateral Babinski signs and some sphincter disturbances. In addition to the spastic paraparesis the other 7 patients had brain involvement. For molecular studies the DNA was extracted from purified PBMC and regions of tax and LTR genes were tried to be amplified by PCR. The results showed that only a region of the tax gene was amplified and not the LTR gene suggesting, this way, the presence of a defective HTLV-I provirus in 10 out 15 seronegative TSP patients namely those who mainly had spinal and brain involvement. De Castro-Costa et al.33 studied 12 HTLV-I seronegative TSP patients from Brazil who clinically presented signs and symptoms typically of TSP without brain involvement, and tried to detected the proviral genome with PCR in the tax/rex and pol parts of the HTLV proviral genome. However, no HTLV-I or provirus was detected. Thus, the analysis of the molecular and clinical studies of HTLV-I seronegative TSP shows, divergent results. In all studies the number of patients is still limited, and from the clinical point of view some studies such as in the Chilean series also show mixed cases with typical and atypical signs and symptoms of TSP. Moreover a long/term study has not yet been carried out with repetitive
clinical, serological and PCR evaluations. On the other hand, the PCR studies were divergent in their results showing the presence of complete, defective or absent HTLV-I provirus. In conclusion further studies on HTLV-I seronegative TSP cases should include a long-term clinical and laboratorial follow-up of the patients and their relatives the building-up of long-term T-cell lines and the use of repeated PCRs, the use of primers for related retroviruses or other viruses and the search for other co-factors or etiologies. So, TSP/HAM still goes on as scientific stimulus and challenge.
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replied August 9th, 2012
Experienced User
Hey guys stay strong,! I'm seeing the doc on Monday, and will let you know what he says, I will ask for pcr htlv, Lyme, and cd4/8 counts. We'll see what he says. Also will discuss my negative results from my previous tests. Tony, what do these symptoms in the first line of your ramirez research paper in last post mean, if you know so I don't have to look them up. I'm still feeling pretty good still have a little dizziness, and some wheezing, cracking joints, but still feel much better. Tony did you try icing your back at night before bed, that helped my back pain considerably. One chance, since your symptoms started so soon, it's not HIV, but could be some viral infection that we don't know about yet, hang in there. Your wife is right and wrong I think. I believe your symptoms are real and are caused by something you caught, but stress and anxiety can make them worse. Clearly you might have a candidia infection, with the white tongue, and should try the diet and supplements.glad to hear you are getting the htlv pcr, and I hope it's negative, cause I really think we are dealing with a fairly new virus that hasn't been exposed enough yet, as it seems very much more contagious than HIV or htlv. Time will tell and we just need to try and relieve or symptoms the best we can until we get some definitive answers. Also from time to time still get a little brain fog and trouble concentrating, but not as much as before. I will let you know what the doc says come Monday. God bless!
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replied August 9th, 2012
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DFrank,

Thanks for your words and actions - I'm glad that you found a doctor that is willing to work with you - we all benefit from the discoveries that you make. Thank you for continuing to test for things.

Here are the explanations of the symptoms you asked about:

(1) spasticity: A state of increased tone of a muscle (and an increase in the deep tendon reflexes). For example, with spasticity of the legs (spastic paraplegia) there is an increase in tone of the leg muscles so they feel tight and rigid and the knee jerk reflex is exaggerated.

(2) hyperreflexia - An exaggerated response of the deep tendon reflexes, usually resulting from injury to the central nervous system or metabolic disease. Also called autonomic dysreflexia.

(3) bilateral Babinski signs - The Babinski sign is a reflex that happens when the bottom of a persons foot is stroked and the big toe curls up in response. This reflex is usually present in babies for the first 6 or so months of their life and goes away once a certain group of nerves running from the brain to muscles in the lower limbs is fully developed and functions to block the Babinski reflex. The Babinski can reoccur in people if this group of nerves gets damaged and is not able to block this reflex anymore. Strokes, aneurysms, and tumors are some things that can cause this. Bilateral just means that the reflex is present in both feet.

(4) sphincter disturbances - this could refer to sphincter responses in the bladder, rectum, or esophagus. Difficulty urinating, defecating, or swallowing.

DFrank, regarding your suggestion about icing my back, I appreciate that but am going to try heating my back instead. I've been suggesting to everyone that heating the body kills viruses, and that Alberto from Italy had reduced symptoms for an entire YEAR after contracting a fever from a bladder infection. Alberto also found a paper by Hatanaka that suggested that HTLV could be treated or cured by hyperthermia (heating the body to 108F). If you look up "hyperthermia dreams" on the web, you'll see a medical paper by a Russian group that heats the body to 111F, which shows antiviral activity against HIV and improvement with other disorders. Since I got sick I noticed that my body temperature is a few degrees lower than normal, and medically speaking colder body temperatures encourage viral reproduction. Along those lines, I am going to look into a heating pad for when I am sleeping or sitting. Honestly I wish that I could get the hyperthermia from the Russian group, I would love for my symptoms to subside.
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replied August 9th, 2012
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I got thrown off of MedHelp - again! HTLV can't be mentioned there, when it is asked about or discussed, people get banned!
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replied August 9th, 2012
Experienced User
What's up with that? Can't discuss it, they don't research it, say its not harmful, but they test for it when you give blood! Bass ackwards! Thanx for the explanation of those conditions tony. I know I've had the sphincter symptoms on and off throughout my illness. Your thoughts on hyperthermia treatment make sense, but isn't it dangerous to heat the body past 106 degrees ? I would think your brain would cook at 111 F. But I'm gonna check it out, someone in the US must be experimenting with this procedure. I've also noticed that my body temperature runs a little low 96-97. Didn't think much of it til now. Anyway, I'm hoping for a good doc visit, I'll let you know. Hey, nice to hear from the earlier guys, stay in touch so we can help each other out!
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replied August 9th, 2012
Experienced User
If for some reasom I was to have HTLV, and if it came back positive. I will e-mail the news station, and tell them my story cause I know how much they love stories, and hoprfully it'll be enough for them to investigate, and mention it on the t.v for everyone to here. But, I don't know, I just don't think that I have it though.
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replied August 9th, 2012
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Dalton,

Great idea - I've already tried contacting the Wall Street Journal, FrontLine, and other news organizations about HTLV. They didn't even give me the courtesy of a reply. If we want recognition, we'll have to sue the government LOL.

Best wishes.
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replied August 9th, 2012
Extremely eHealthy
DFrank,

MedHelp has denial about HTLV (the doctor there actually said it's not an STD!!!), and it's not allowed to be mentioned at TheBody site, POZ, etc. Dr. Bob on TheBody site actually told someone NOT to get tested for HTLV.

You hit the nail on the head - they quietly test for HTLV in the blood supply but don't ever discuss HTLV - what a damn scam!

Yes, hyperthermia is a controversial and somewhat dangerous treatment - the Russians go higher than the 108F limit to 111F, but if you read the article "HyperThermia Dreams", they pre-treat the patient so that the higher temperatures can be handled better. They claim not to have lost a patient in over 500 treatments. Here in the USA, hyperthermia is used as a cancer therapy, but it's usually regional (one part of the body) and not whole body like the Russians do.

I'm glad that you noticed that your body temperature is a little low too - everyone else, please take your temperature, see if it's also lower than 98.6F / 37C.

Best wishes.
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replied August 10th, 2012
Tony I paid 395 for HTLV PCR test, privately, they said it will take three weeks to get my result back, I also received a phone call from imperial college st merry hospital as I emailed them again and toled them my symptoms, & requested to Dr to do PCR test for me, they called me today and ask to come 2:00 pm I am in the way, I will speak the Dr shortly, and let you know the outcome, I know I have 99.9 % of symptoms, but plz pray for me, I have a very young baby, and if I have something his all feature will finish, I will never ever forgave my self for this, plz pray for me that's my last hope.
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replied August 10th, 2012
Experienced User
Hi everyone, i know u r not in the best of health, but i'm happy we r not that bad after all.

I went back tot the doctor yesterday, who again said it might be anxiety...yea, right. Is there a test to diagnose anxiety? If yes, he did not run that test on me, so how could tell? It's just there way to tell us they don't know what's wrong.

Still having teeth marks on my tongue and a little stomach problem now and then. Still on meds for that.
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replied August 10th, 2012
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Ustas,

Thanks for writing in, we seem to be in agreement, i.e. it's not HIV, it's not AIDS, so we need to be happy about that. And of course we all know that the anxiety excuse is total bull. I'm still feeling lousy, and I don't see this getting better.

In the paper about the patient in Greece who was cured of HTLV with Azacytidine, I noticed that he didn't have any risk factors - married, 58 years old, never had a transfusion or used IV drugs. Also his wife wasn't sick, while this guy was completely wiped out with illness. Another guy on the HTLVhelp page on face book, Derrick, also mysteriously got HTLV (he's paralyzed from it), he's married & clean, wife & three kids healthy, and blames it on his job as a floor installer.

The reason I bring up these two cases of HTLV with no apparent risk factors is perhaps we're dealing with a more environmentally available version of the virus. Unlike Africa, where monkeys carrying the virus are common, there are no disease carrying monkeys in Greece or the USA. However, mice are common worldwide, and an identified mouse retrovirus (Murine Leukemia Virus) exists, formally known as XMRV. XMRV is very similar in structure to HTLV and is often cross-reactive in testing for it. Could mice be spreading this disease through their feces? Could Derrick the floor installer have come in contact with mice feces at his job and then became sick? Same for the patient in Greece? All of us on this forum know exactly how we got sick, but many more times people are sick and don't know where they got it from, and most of these people are living clean, monogamous lives.

Best wishes.
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replied August 10th, 2012
Extremely eHealthy
Here's an article that mentions the cross-reactivity between HTLV & XMRV:

Results

Of US donors, 0.8% (8/1000) were CMIA reactive: 1 p15E and 3 of 7 gp70 reactive samples WB confirmed yielding a 0.4% seroreactive rate. No HIV-1 infected specimens were reactive. Of the Japanese samples, 1/156 uninfected (0.6%) and 20/486 HTLV-infected samples (4.1%) had detectable p15E antibodies by CMIA and WB. Eight additional HTLV-infected samples were gp70 reactive; 4 of 486 (0.8%) were gp70 reactive in WB. No XMRV pol or env sequences were detected in the seroreactives.
Conclusions

XMRV seroprevalence ranged from 0 - 0.6% in US blood donors, HIV-1 infected and HTLV uninfected subjects. Notably, 4.1% of Japanese HTLV-I infected individuals were p15E reactive.

Inspection of sequence homology between HTLV and XMRV revealed a high level of conservation within the immunodominant region of HTLV gp21 suggesting increased seroreactivity is due to cross-reactive antibodies.
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replied August 11th, 2012
Experienced User
The dr. can't tell me that it's anxiety, as a matter of fact, the one's that I have seen knows that I have something, they just don't know what it is. I got tested thursday for all of the std's, and will have the results in 2 weeks. He also thinks that now I have developed skin disease. This isn't going to be good, I just know it. I don't know guys, but I looked up symptoms of HTLV on this one site, and everything that was listed isn't even half of what I'm going thru. In fact, the main things that I'm going thru isn't even listed for HTLV. The only thing that has every symptom that I'm going thru is HIV
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replied August 11th, 2012
Extremely eHealthy
Dalton,

What are your symptoms?
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