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Certain HIV positive, but negative tests (Page 24)

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June 13th, 2012
Experienced User
Guys same here. I get pins and ant bite sensation on my body. have lumps on back of my tongue.Blurred vision, tiredness,dry mouth, dry sensitive skin, easy bruising, limb, arm, shoulder pain.Leg muscle getting weak.
With all these symptoms cant think of better life, keep getting sucidial thoughts every day.
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replied June 13th, 2012
Extremely eHealthy
AdviseMe / Casper,

I know that this illness is terrible, and not the "asymptomatic" description that the doctors believe. Please keep your spirits up, and take supplements such as Curcumin, Fucoidan, and Green Tea tablets. I know that it's hard to see that things will get better, but I hope in my heart that someone makes a discovery that cures this horrible virus HTLV. The people who I was involved with are exhausted from this illness, as well as myself.

Best wishes / HTLVhelp
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replied June 13th, 2012
Experienced User
htlv
Tony, why is there such a big cost for a little mistake. How long to keep the fight on. I dont enjoy my life any more. Dont find energy, no concentration. I was very ambitious in life, enjoyed my job. I Made my perfect life hell. Cant see living life with htlv like disease.
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replied June 13th, 2012
Experienced User
Tony, why is there such a big cost for a little mistake. How long to keep the fight on. I dont enjoy my life any more. Dont find energy, no concentration. I was very ambitious in life, enjoyed my job. I Made my perfect life hell. Cant see living life with this disease
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replied June 13th, 2012
Experienced User
Hey casper, me and you sound exactly the same. It scares me because itchy skin all over the body is a symptom of lymphoma. The throat thing as well, I'm starting to loose my patience with this ENT dr that I'm seeing. I go back tommmrow and I'm gonna ask about the possibility of this being a form of hpv related throat cancer. I'll let u know how the visit goes.


Adviseme, you said it best I couldn't agree more. We all know something's very wrong going on inside our bodies and these worthless drs in my opinion can't seem to find anything out. I guess it's completely normal to have a sore stiff neck, sore neck glands, armpit pain, groin pain, liver and spleen pain. What a bunch of B.S. our medical field is a complete joke in my opinion.

Good luck everyone,
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replied June 13th, 2012
Extremely eHealthy
made sure that the other person was HIV negative
AdviseMe,

Same here - I was responsible and made sure that the other person was HIV negative, only to get sick with another disease. Also, it's not fair that no one warned us about this - we are programmed to be so concerned about HIV but not about other diseases. Like you, I feel that my life is over, I just live to get through another day. The fight is enormously long, by the time that any of us convince our doctors that this is a real problem, then getting treatment (if any exists), then hopefully getting better - none of this will happen soon. And how about convincing the world to recognize this problem? That will also take a very long time, even people on this forum have reacted negatively to acknowledging that something's really wrong. One doctor even admitted that HTLV isn't even on the "neglected diseases" list - how insane is that? Like you, I used to enjoy my life, enjoy working, have energy, have concentration, enjoy looking forward to the future - that's all over for me as well. Please don't talk about suicide, I certainly don't want the mistake that the world has made in ignoring a widespread disease to cause anyone to kill himself. We know that this is a real problem, we know that this is a serious problem, and if we don't do everything that we can to make it known to the people, the government, and the medical industry, then we will have suffered and died for nothing. I've added a page for HTLVhelp on face-book, along with a www site and a tw*tter page, not to mention the HTLV related on-line petitions. The reason I did all of this was so that we can move this cause forward, so others don't have to suffer silently and be told that they are crazy. When enough people push for recognition of this, awareness of this, and treatment of this, then real change will take place, just like with HIV in the eighties. Please anyone - whether you think that you have HTLV or not, please help move this important health issue forward, instead of letting millions of people suffer.

Best wishes / HTLVhelp
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replied June 13th, 2012
Experienced User
Adviseme I feel the same as you, but you have to understand we made a choice and now we have to live with,it. That includes the pain,, stress, guilt, and low self esteem. I have those days to. My life was so perfect with,my gf, job , friemds but now I feel ill and bothered by this illness., stay strong we have to face this, we cant be cowards. Even if this disease kills us..

Also I see you guys mention lumps, patches, ulcers in the back of your,tongue. If you google pictures of tongues thats how tongues look . .,remember if they wer ulcers they would be painfull.,
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replied June 13th, 2012
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Scared,

I went to an infectious disease specialist from the very beginning, only to be told that I needed a psychiatrist at the two month mark. Like everyone else here, I kept testing negative even after that, and up to today. Last week I saw a hematologist, who ran more blood tests, said that he can't find anything wrong with my blood counts. We agreed that I will come back every three months to get tested for lymphoma, that's the best that the medical industry can do, and like you, I agree that is a complete joke. So between now and when / if I develop lymphoma, I have to suffer with horrible symptoms. If I do eventually develop lymphoma, I can then get treated with Azacytidine, which is what cured the patient in Greece after 8 months. Is this a sane medical protocol? Not at all. Essentially we need to circumvent any talk of HTLV with a doctor by getting tested for MDS (pre-leukemia) or ATL (a rapidly fatal leukemia), then getting treated before we drop dead. None of this sounds like modern medicine - modern PCR tests should be able to detect small quantities of the virus (as is the case with HIV), and treatment should be commenced immediately, not when the patient is near death.

Best wishes / HTLVhelp
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replied June 13th, 2012
Experienced User
Hey everyone... Do any of yout Gfs/Wifes have the same throat problem?? Or is it.just us Guys.. ???
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replied June 14th, 2012
Experienced User
i like your question man , it worth a deep explanation ,,
my GF didn't get any throat ulcers OR neck glands Or even a lymph nodes any where !!!
what do you think !!?
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replied June 13th, 2012
Experienced User
Tony,Depressedman,Thanks for youe convincing message guys.
DepressedMan,i have lumps on the back of my tongue, there are 5-8 i belive. they are not pain full.
Also it the tip of my tongue i have red spots.
please google for New HIV-Like Virus in China. there is some image for tongue. my tip of my tongue looks same.
All these symptoms stated on the site matatch to mine, but i have few morelike Back pain, stiffneck.
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replied June 13th, 2012
Experienced User
No problem were all in this together..

The 5-8 lumps at the back of your tongue are normal.. Look at normal pictures of tongues on google and you will see thats normal. Dont google sick tongues..
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replied June 13th, 2012
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D-man,

My symptoms match the ones that AdviseMe is experiencing. My girlfriend is sick, but has more of the fatigue, itching, and rashes - fortunately she is not experiencing the abscesses that I've gotten twice already. I was 100 times sicker when I first got this, now I am feeling better thank God. I still experience the pain you all described, but I am able to sleep at night, which in the beginning I wasn't able to do for three months. Being that I am infected longer than the rest of you, my symptoms might be less severe. I hope that gives hope to some of you who are suffering way more than I am.

Best wishes / HTLVhelp
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replied June 13th, 2012
Experienced User
You know, like I said before tony. It may or may not be HTLV. I've been thinking, it seems like every year there's always something new so they say that comes out. What if what we have maybe a new STD that has never been heard of? Cause why else would we be getting all negative results, and we know whatever we have is an std, make no mistake about it. I'm getting more herpes on the left side of my mouth on the top and bottom lips.
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replied June 13th, 2012
Experienced User
Yea im experiencing similiar symtoms, im glad to hear your feel better tony. I cant wait til I lose all my symtoms, it ruins all my days.


Have you tested for anything other than common stds? Like other bacterial/viral infections? Im going to start testing for other deaseses
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replied June 13th, 2012
Experienced User
Agree with you Tony, no one is bothered to take HTLV as a seriously. They say 95% of the people never devvelop any symptoms and hence no medicine exists, Which is the biggest joke on medical industry and international scientfic community.40 years no one has studied enough on this virus. Till date medical industry and scientfic forum is not able to answer the basic questions on HTLV and have kept every one on dark.
1) No one knows what is the window period for testing due to sexual exposure. i have 3 emails 1 from blood bank,one from st Merrys's where HTLV trials are currently done, and one from HTLV reaserch doctor. none of these sources gave a conclusive answer or confirmation. All they said was 8-12 weeks is resonable, 3 month is fine. none of them is sure, which is correct. The data around sero conversion is not sutudied yet.
2) There is no enough data how is it sexually transmitted, is protected sex actually protected for HTLV infection.No it is not.
3)All HIV forum are not open to answer any question on HTLV, both are retrovirus and supress immune system. Why arent we accepting HTLV as another virus and getting some knowledge and making people aware of this, rather then denying to accept and say no this is HIV forum.which means we dont care people with HTLV.
4) Past 40 years of reaserch, hasent been able to find the receptor cell for HTLV infection, how does the virus infects the other cell.what is the other code which supports the virus to infect.
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replied June 13th, 2012
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AdviseMe,

Thanks for seeing that HTLV is the country club of viruses - researchers look at it, experiment with it, make discoveries with it, but no one talks about treating or curing it. I was shocked when Dr. Wohl replied to me that testing for it is useless since no treatment exists - that's like saying let's let the whole world get infected because we have no treatment! Totally insane logic, especially coming from a doctor.

(1) Mr. Sadowsky from TheBody site wrote that antibodies might never develop for HTLV - he advises relying on PCR testing instead. My stupid hematologist mentioned PCR testing, and when I got the results today, he didn't do the PCR test, he did the antibody test. When I called him to ask why he didn't do PCR testing, he said he didn't think it was necessary. I was very disappointed to say the least.

(2) Mr. Sadowsky also wrote that unprotected oral sex can transmit the virus - this agrees with two girls who blew me and are now sick.

(3) I agree - all HIV forums are against any mention of HTLV, Dr. HHH on MedHelp says that HTLV is not a sexually transmitted disease - he even won an award for his work in sexually transmitted diseases. So we are giving awards to someone who doesn't think HTLV is an STD? Insane! Because of my mention of HTLV, I have been thrown off of MedHelp, POZ, and other sites because doctors and non-doctors refuse to accept that HTLV exists. I suppose this means that 24 million people are liars?

(4) The research I've read indicates that the GLUT1 receptor is what is responsible for HTLV infection. Since HTLV involves sugars (sacharrides), anything that interrupts saccharides works against HTLV, such as the polysacharrides in Fucoidan.

Best wishes / HTLVhelp
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replied June 13th, 2012
Experienced User
Agree with u TonyDewitt,/i just supported by head with my right hand and with little pressure my hand went numb and my palm all red. i am typing this with my left hand...
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replied June 13th, 2012
Experienced User
I've been following your forum, and like you have many symptoms. Only mine for three years now. Been tested for about everything except htlv which I will get next week. I will let you guys know if I figure anything out.
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replied June 13th, 2012
Extremely eHealthy
Please let us know how your testing goes
DFrank,

Please let us know how your testing goes - we are all looking for answers to what we are going through. We are tired of being told that we are crazy. Thank you very much for sharing your experience with us.

Best wishes / HTLVhelp
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replied June 13th, 2012
Extremely eHealthy
Dalton / D-Man,

Yes, the possibility of a "new virus" exists, but for me, the symptoms for HTLV are so specific that I am convinced that this is HTLV. Like Mr. Sadowsky wrote on TheBody site, HTLV antibodies may never be formed. Furthermore, HTLV disease progression is based on the amount of antibodies, so not having antibodies actually means that you're not progressing to paralysis & death. Mr. Sadowsky also wrote that since HTLV antibody testing is not conclusive, PCR testing is the only way to detect HTLV. How many of you have had a PCR test for HTLV? I believe the answer is no one.

As far as testing for other things goes, I've gotten over six thousand dollars in testing. When the doctor ran out of things to test for, I suggested testing for other things, like CMV, which also came back negative. I want you all to know that I really tried to figure out what this is and spent much of my money getting nowhere.

Best wishes / HTLVhelp
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replied June 14th, 2012
Experienced User
Tony. Its hard to believe that our bodies dont make antibodies for htvl but makes antibodies for everything else. It dont make sense.. Not saying I dont believe you butits hard to believe the human body wouldnt fight against an unknown infection..

I have also gone through many tests and many embarrasing doc visits and wasted alot of money I dont have but I just want to be healthy again.

Tony have you tested for EBV, or helicobactor pylori? I want to test for those next.
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replied June 14th, 2012
Extremely eHealthy
we would like to have a concrete window period for everything
D-man,

I hear you - we would like to have a concrete window period for everything, but because HTLV has different dynamics than HIV, it just doesn't work that way. Mr. Sadowsky works with the Nevada State Health Department, I'm sure he isn't making this stuff up. I had EBV 17 years ago, it is very devastating and will make you feel like you have HIV. My best suggestion is to get a PCR test for HTLV.

Best wishes / HTLVhelp
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replied June 14th, 2012
Experienced User
Tony did u not say u r pcr test at day 137 was negative. Now how can we believe that it pcr test for htlv is accurate.
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