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Certain HIV positive, but negative tests (Page 87)

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July 15th, 2013
Experienced User
So a weird lesion popped up recently. I may be overly sensitive but has anyone had any hhv8 lesions appear? I am now at 9+ months with a 7 month negative hiv but starting to have more chest pain and the weird lesion.

Also - thanks for the post on arup testing.
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replied July 17th, 2013
Experienced User
Where abouts is your lesion?

Have you tested for htlv?
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replied July 17th, 2013
Extremely eHealthy
WS,

I experienced a lesion on my nose & my arm, more like a Mycosis Fungiodes lesion. While I had them, they seem to not get better, then suddenly they went away thank God. You can take an HIV test every day, this is not HIV. If you think 9 months isn't long enough, then imagine people who have been sick for two years like me, 5 years like DFrank, or 10 years like my good friend OverStressed. Sadly some of the people who have feared having HIV have been put into an insane asylum, because the medical industry is in so much denial about HTLV that they will go so far as to have these poor people put away.

Best wishes.
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replied July 18th, 2013
Extremely eHealthy
PS: I also had chest pain, especially in the beginning. HTLV causes Alveolitis, which is an inflammation of the lung.
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replied July 17th, 2013
Experienced User
..
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replied July 18th, 2013
Experienced User
Anyone looked into Cryptosporidiosis??
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replied July 18th, 2013
Extremely eHealthy
Here's an article published two years ago that indicates that testing for HTLV is NOT well defined.

Retrovirology. 2011; 8(Suppl 1): A246.

WHO antibody reference panel for donor screening assays that detect antibodies to human T-lymphotropic virus type 1 (HTLV-1) and type 2 (HTLV-2)
Erin Wigglesworth,1 Elliot P Cowan,2 and Clare Morris

Antibody screening tests are critical tools to identify individuals infected with HTLV-1 and HTLV-2. However, the lack of reference panels hinders the ability to evaluate existing tests and new technologies that aid in the screening for these agents. For example, some HTLV-2 subtypes may escape detection by currently available technology. The World Health Organization, through the support of the WHO Expert Committee on Biological Standardization, is in the process of generating such a reference panel.

This reference panel will best function as a tool for test assessment only if it consists of specimens representing the diversity of HTLV-1 and HTLV-2, especially those subtypes known to present challenges to detection using serological tests. A panel consisting of seven members (HTLV-1a-d and HTLV-2a,b,d) is being considered.

The reference panel will be fully characterized and assessed in an international collaborative study. This first WHO HTLV antibody reference panel is expected to be used by blood screening and diagnostic test developers, blood banks, hospitals and other establishments performing HTLV serology testing.
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replied July 18th, 2013
Experienced User
Thanks Tony,
I hope they come up with this new reference panel soon. Like i said before i will be taking any test available to me.
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replied July 18th, 2013
Extremely eHealthy
DW,

You're very welcome - I've come across many articles like this that support the notion that HTLV test simply is not conclusive. We need to accept that our disease could be HTLV, and like you said, take the newer HTLV testing when it becomes available.

Best wishes.
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replied July 18th, 2013
Experienced User
Tony
I been trying to find similar articles like the one you posted but i never seen the one you posted ever, when you get the chance to post similar articles, please do.
Again thank you.
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replied July 18th, 2013
Extremely eHealthy
You're welcome - I've been posting the titles since you asked me - notice above I have the title quoted as follows:

"WHO antibody reference panel for donor screening assays that detect antibodies to human T-lymphotropic virus type 1 (HTLV-1) and type 2 (HTLV-2)"

In order to find these articles, you need to be creative with your internet searches, I tried searches for "WHO HTLV", "HTLV Undetectable", etc. Also AdviseMe finds some great articles that I've never seen before, so I'm not sure what his search method is. If you get bored searching for those, you can try searching for "Dog Knot".

Best wishes.
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replied July 21st, 2013
Hi Tony:

I wanted to bring one the statements above to initiate a healthy discussion.

"However, the lack of reference panels hinders the ability to evaluate existing tests and new technologies that aid in the screening for these agents. For example, some HTLV-2 subtypes may escape detection by currently available technology"

As you know, and I've stated several times in this discussion forum, I've the feeling the same happens to several other viruses, including HIV.

If you believe in the article's context , why couldn't the same happen for a new & unknown HIV strain, subgroup or even a "HIV-3" virus which has no means yet of being detected. (my editorial: don't be alarmed. I didn't read or find anything about a new HIV virus. This is just for brainstorming).

Hence, can you help us understand what makes you so sure it's not HIV ? And why are you sure it's HTLV ?

If you dig some of the articles by Dr. Sonnabend, Dr. David Imagawa, among others, you will see that the same line of questioning is made about HIV & AIDS. Here is one excerpt:

"It had always been dogmatically asserted by AIDS experts that sufficient viral replication follows infection with HIV so that enough viral protein is made to induce an antibody response. Thus, we have been told that after a three month "window" of seronegativity following infection, seroconversion ensues and the infected individual becomes reactive on the HIV antibody test. There is a frequently reproduced graphic representation showing this hypothetical course of events - an initial burst of viral replication after infection followed by the appearance of antibody three months later. However, in the absence of models of human retrovirus infections, there is absolutely no basis to justify this authoritative depiction of the course of infection. It is yet another example of speculation being presented as fact that has typified presentations on AIDS.

It is just as likely that situations exist, perhaps commonly, where infection is followed by very limited viral replication, insufficient to elicit an antibody response, but where the viral DNA is maintained in the cell in a dormant or latent state. In such a case, the individual would be negative on the antibody test, but may show the presence of HIV by a genome detection technique such as PCR If the mechanisms that maintain latency are perturbed (and such perturbation could happen decades after infection, if at all), then the viral DNA is activated, viral proteins are made and assembled into viral particles, and if this process is of sufficient magnitude, the body will respond by making antibodies and thus seroconvert. You can find the full article if you google "FACT AND SPECULATION
ABOUT THE CAUSE OF AIDS".

(Dr. Joseph Sonnabend was one of the earliest AIDS clinicians and researchers. He helped introduce the concept of safer sex and was a pioneer in establishing community-based research. He was mentor to many of the first generation of AIDS activists and is famous among patients for being the first doctor who treated them as equals. He recently retired from medical practice in New York and now lives in London)

What do you (and others are also welcome to comment) think ?

Stay healthy
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replied July 23rd, 2013
Experienced User
Resperanza
I agree with what you are saying, it seems to me though that after four years there is not much more testing you could do, and it seem that the lymphocyte panel test is going to be the most useful way to test.
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replied July 18th, 2013
Experienced User
Tony
I realized you added the title, I didn't recognized it at first but i looked carefully and i found the title, thanks.
I wonder if the pcr could detect theese htlv type 2 that may escape the antibody test.
I'm also assuming that some htlv 1 strains are escaping detection.
Also, I hope the new reference panel will be fully characterised, assessed and implemented in laboratory standards soon, I will be keeping a look out for it.
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replied July 18th, 2013
Extremely eHealthy
Of course HTLV type 1 & 2 are being missed. Countries like Japan & Brazil are trying to get a handle on testing & diagnosis, meanwhile the USA is doing nothing about HTLV.

For anyone who was obsessed with women not complaining about this disease - I can tell you from first hand experience that they are in DENIAL. I've infected DOZENS of women, and NONE of them will even discuss this disease, they all pretend to be fine when they are visibly sick. One girl even wrote me to say that she was THRILLED to lose twenty pounds! Any guy who lost 20 pound would RUN to the doctor, but this girl is HAPPY that she lost 20 pounds. I hope this puts to rest the "why dont women care about this disease" concern.

Best wishes.
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replied July 18th, 2013
Experienced User
I was talking to someone who has htlv 2, his doctors told him they will prescribe him anything he wants. His doctors believe he is educated enough about htlv to make that decision.
He is very knowledgeable about htlv.
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replied July 19th, 2013
Extremely eHealthy
Well then show him the HTLV Azacytidine article - if Azacytidine can cure HTLV for a 58 year old guy in Greece, it can cure the rest of us. Get me in touch with his doctors, if they'll prescribe Azacytidine for me, I'll be the first in line - I don't want to feel like this disease is killing me for another day. You already have my number.

Thanks.
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replied July 19th, 2013
Experienced User
I did show him that medication, i sent him the the article of the 58 year patient and the htlv infection and the eye article and highlighted that drug, he then requested the prescription info from the fda and from the drug manufacture themselves, i think their name is Gene something i forget,
Well anyways he said that the fda haven't sent him anything yet but that the manufacturers have and he said the drug has some nasty side effects and that there is practically only a 16% cure rate he feels doubtful about the drug but he will talk to one of the Japanese authors of the eye infection article, to get more info.
I will definitely keep you updated about any findings.
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replied July 19th, 2013
Experienced User
If all comes to worst for you Tony, his doctors are in New York, i don't doubt i could get you in touch with some of his Drs. Although it won't be easy.
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replied July 19th, 2013
Extremely eHealthy
It's easy, just call me or email me with his doctors' names.

Thanks.
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replied July 19th, 2013
Extremely eHealthy
Only one patient in Greece was treated, and that one patient was cured, so the cure rate is currently 1 out of 1, which is 100 percent! The company that sells Azacytidine is call Celgene.
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replied July 19th, 2013
Experienced User
Yes you are right, i recall now it is celgene.
I will have to ask him for his doctors names so that i could forward them to you. I talk to him once in a while so next time i talk to him i will ask him.
I want to also mention that he has a great doctor-patient relation with his doctors. Maybe this is one of the reasons they offered that to him.
I would like to believe the cure rate is high with vidaza, but we are both doubtful.
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replied July 23rd, 2013
Extremely eHealthy
Thanks, please do, I want to be treated for this nightmare.

Best wishes.
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replied July 18th, 2013
Experienced User
////
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replied July 19th, 2013
Experienced User
Has anyone else on here noticed ears ringing constantly? Especially morning and nights.
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replied July 19th, 2013
Extremely eHealthy
Yes, yes, yes.
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replied July 19th, 2013
Experienced User
Just an enquiry I made and response. So don't attack me as it was not my response. Thanks.

Please see below regarding your query.


What is the window period after infection before antibody tests for HTLV infection are always positive?

1. The best published data are from Angela Manns and co-authors 1992 paper published in the journal ‘Blood’1. They repeatedly tested blood transfusion recipients who had been transfused with HTLV-1 infected blood with an enzyme linked Immunosorbent assay (EIA) which used HTLV proteins obtained by breaking up the whole virus). The EIA had become positive at a median of 53 days (i.e. half of all the recipients were shown to be infected with HTLV had a positive EIA at 53 days.

2. Using the screening assay 2/3 of infected recipients had antibodies to HTLV-1 detected by day 64 following exposure and all infected recipients had antibodies to HTLV-1 detected by day 110 following exposure.

3. However in the confirmatory assay, (a ‘western blot’ in which different virus proteins are separated on a test strip allowing antibodies to the different proteins to be distinguished - this shows as a band on the strip), all infected transfusion recipients had a least one detectable band at 55 days (8 weeks) with a band first detected in half the recipients as early as 40 days (6 weeks).

4. These data were used to estimate the seroconversion window period by Schrieber and colleagues in their 1996 New England Journal of Medicine paper estimating the risk of transmission of HTLV-1 by a blood donor infected with HTLV-1 donating blood during the window period2. They estimated the window period to be 55 days (range 38 - 72).

5. A more conservative range would be out to the midpoint between the last negative and first positive results from the Manns paper i.e. (38 - 96.5 days).

6. The screening tests used to check for antibodies to HTLV are better today than they were 20 years ago, using recombinant proteins to make then both very sensitive and very specific. (This means they are very good at detecting antibodies when they are present and have a very low rate of false positive results).



What should I do if I have a negative antibody HTLV test result?

1) Most seroconversions have occurred within 8 weeks of exposure.

2) If the time of definite exposure (e.g. unprotected sexual intercourse with a known HTLV-1 carrier) is known to be less than 90 days then a repeat antibody test performed after this period is the most reliable test.

3) If the infection status of the sexual partner is not known and the test was performed more than 60 days after possible exposure, further testing is not considered to be helpful




Reference List:


1. Manns A, Murphy EL, Wilks RJ et al. Detection of early human T-cell lymphotropic virus type I antibody patterns during seroconversion among transfusion recipients. Blood 1991;77:896-905.

2. Schreiber GB, Busch MP, Kleinman SH, Korelitz JJ. The Risk of Transfusion-Transmitted Viral Infections. New Engl.J.Med. 1996;334:1685-1690.



Hope this information is useful.

Kind Regards

Poupak Saleh
Business Manager for the HTLV Group
Tel: 020 331 21521 / Fax: 020 331 26123
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replied July 24th, 2013
Extremely eHealthy
I exchanged emails with this guy a long time ago, and he is part of medical industry's head in the sand nonsense. Like AdviseMe once wrote, any of these people who don't believe that we have a disease can inject a vial of our blood into them & then see what it's luck to suffer horribly. Not only is this guy unwilling to consider that the test is not conclusive, he's also unwilling to discuss ANY treatments - so what the hell is the use of having a center for HTLV ????

Best wishes.
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replied July 19th, 2013
Experienced User
..
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replied July 20th, 2013
Hi I am from China.I was infected the disease too! We ask our government for research ,but they think that we just be afraid of AIDS.The patient don't agree with the government" opinion.We organised many patient to the CDC,but they always perfunctory us.
Mann patient has got cancer and die at last! It's terrible!!!!I hope we try our best to find what Virus or bacteria it is!!!!
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replied July 20th, 2013
Experienced User
I'm sorry to hear that. How long ago did this happen and what was your risk exposure?
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replied July 22nd, 2013
Extremely eHealthy
TN,

Your post reminds me of the post on TheBody site, where in 2004 a group of people died one by one from cancer after being infected with an undiagnosable virus.

Best wishes.
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replied July 20th, 2013
Experienced User
..
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replied July 21st, 2013
Experienced User
Tony nie.. So u have been diagnosed?
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replied July 21st, 2013
Experienced User
..
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replied July 22nd, 2013
Experienced User
Guys,

How are you? I have an update.

My birthmarks started to grow slowly. And there are many small new ones on shoulders arms and etc. It's not a good sign anyway. Some processes are still going on in my body and immune system works so hard to control them.
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replied July 22nd, 2013
Extremely eHealthy
Jason Bourne - the system isn't allowing me to e-mail you directly, so here's my reply to your e-mail:

Good to hear from you - out of everyone I've talked to about this, you are the most determined to get treated, and I like that very much about you.

Certainly there's a protocol for Azacytidine, it's 7 days of dosing followed by three weeks of no dosing. Since they never researched how long someone can tolerate the medication non-stop, the 7 day on / 21 day off protocol is standard, whether that works for us (i.e. cures HTLV) or not remains to be seen.

There are side effects, but that's a risk & trade off that people who need the medication are willing to bear.

Without medication, I have pain in my back, legs, eyes, head, blurry vision, arthritis, general feeling that I am being eaten alive by this virus and will be dead in a few years from HAM, leukemia, lymphoma, mycosis fungoides, cancer, etc.

With the medication, all of those symptoms might go away (and I would LOVE that), but be replaced with (treatable) nausea and vomiting. So if you're asking me would I be willing to replace the horrible pain and sense of dying that I am in with possible nausea, vomiting and hope of being cured, I think that you already know my answer is yes.

They already cured multiple people with HIV using a bone marrow transplant, that's also possible with HTLV, but it's a much bigger procedure than just getting an injection of Azacytidine.

Thanks for writing, and please keep my number handy.
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replied July 22nd, 2013
Experienced User
Hi Tony,

I suspect that we will be able to track progess while on treanment even without any supervition at all (I'm considering the worst case scenario if I will have to make shots by my self and there will be no other data). This is very simple - there's a great probability that the simpoms will fade away after 1, 2 or 3rd cycle.

I'm saying it because one of my friends has hodgkin's lymphoma and is on 3rd cysle of chemo. All his symtoms started to fade away quickly he said.
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replied July 22nd, 2013
Experienced User
I forgot to mention regarding some patient who remain on Azacytidine for 7 years and is still in good health (link available on request). So, the medication can be well tolerated even during several years of injections.
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replied July 24th, 2013
Extremely eHealthy
JB,

No offense, but I feel that we need to be treated by a doctor, I'm not taking Azacytidine without strict monitoring by a doctor. I know it will help us based on research done by Louis Mansky's group and the John Meletis paper where an actual HTLV patient in Greece was cured. By the way, the patient in Greece who was cured was monogamously married, did not abuse IV drugs, so just like Derrick & the woman for Trinidad, this guy caught HTLV from somewhere else than sex or drugs. Even the guy's wife tested negative for HTLV.

Best wishes.
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replied July 22nd, 2013
Experienced User
No one has hiv here
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replied July 22nd, 2013
Extremely eHealthy
WK,

True, no one here has HIV, I've said that more times than anyone else. However, I made comparisons to HIV because we are dealing with a retrovirus that is like HIV, and after Louis Mansky asserted that Azacytidine could cure HIV, a HTLV patient in Greece who was treated with Azacytidine was cured as well. Some HIV & HTLV patients were treated with a bone marrow transplant, and they appeared to be cured. So while I am saying that we do NOT have HIV, I am also saying that both HIV & HTLV are treatable with Azacytine & bone marrow transplant.

JB,

What I meant by tolerance for Azacytidine is how many consecutive DAYS the medication can be tolerated for, not how many cycles. Like you said, long term cycle treatment is well documented, but no one has researched why the cycles are only 7 days long and not longer. I'd rather have a doctor administering the medication, instead of doing it myself. I believe if we are going to do with the right way, we need a doctor to treat us & track our progress.

Best wishes.
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replied July 22nd, 2013
Experienced User
I just don't understand why not one person from here or other forums have been diagnosed through testing..
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replied July 22nd, 2013
Experienced User
I would like to share a few of my thoughts.

1. This disease severely suppress our immunity in the very beginning, which would reactivate whatever in our body, inclusive of candida.

2. After a certain period immune will start to recover. However it never really get to 100%. You might see your cd4 cd8 counts go up but their proliferation is impaired.

3. For those whose symptoms lesson or even totally subsided, their immune's proliferation has back to normal.

4. MY conclusion is this is something which gives you a heavy punch and knock you down once. You can recover depends on your immune recovery.

With the fact that no specific pathogen is identified, I would recommend immune therapy + wide spectrum antiviral + antibacterial + anti fungal.

Here are a few therapetic approaches that I collect from china forum where some patients claimed to be effective.

a. Thymosin + Interferon Alpha (+ Ribervarin)
b. Itraconzole + Rimpfapincin
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replied July 23rd, 2013
Extremely eHealthy
Hope,

Very well written, thank you! I would like to address each of your items:

1. Definitely severe immune suppression at the beginning, causing systemic Candida infections in the groin, mouth, etc. Not to mention rashes, staph infections, etc. Six months out I was still dealing with these.

2. Yes, immune recovery long term, but very slow.

3. Immune recovery with HTLV is a tricky topic, because unlike HIV, the immune system's health cannot be measured by counts. Whereas HIV destroys immune cells, HTLV causes a 'clonal' effect, where infected immune cells are cloned, not destroyed. So saying that someone with HIV has a cell count of 1100 is different from saying someone with HTLV has a cell count of 1100, since a good portion of those cells could be HTLV infected clones (i.e. zombies). A separate test for clonality exists, and is taken to track leukemia - it's mentioned in the Meletis HTLV Azacytidine article.

4. Agreed that wide spectrum antiviral & immune boosters are needed, not only for the virus itself, but for the auxilliary diseases (e.g. Candida). My therapeutic approaches include Eclipta Abla, Chinese Skullcap, High dose Vitamin C, Multivitamin, Garlic tablet, and Curcumin tablets (4 at breakfast). Also I have yogurt because it resolves my intestinal candida, meaning that I can have better stools.

Best wishes.
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replied July 23rd, 2013
Experienced User
Has everyone's exposure been unprotected vaginal intercourse or has there been other?
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replied July 23rd, 2013
Extremely eHealthy
I infected two girls by them giving me oral sex, so it is transmissible if infected people have oral performed on them.

Best wishes.
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replied July 23rd, 2013
Experienced User
Fair enough tony.. May I ask Wht symptoms those girls have? Are they all the same as I am worried I have passed it onto my girlfriend. Thanks
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replied July 23rd, 2013
Extremely eHealthy
The same symptoms we all are experiencing, classic HTLV symptoms - back & leg pain, eye and skin problems, etc. For the women it can also mess up their menstrual cycles.

Best wishes.
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replied July 23rd, 2013
Experienced User
One last question about that.. How long after you were with then did they experience these symptoms. My exposure was 6 months ago therefore my girl would be about 5 months or so..
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replied July 23rd, 2013
Extremely eHealthy
I know for one girl it was the next day - her eyes were beat red and her ankle was the size of a football. Just to cut to the chase, if you have had any type of sex with her, she is most likely offended. This isn't HIV were unprotected oral is unlikely & vaginal is a 50/50 - as JB said, this is highly contagious. The only reason that they think HTLV is less contagious is because they don't have an accurate way to test for it - how ironic that something should spread like wild fire because an accurate test for it doesn't exist.

Best wishes.
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replied July 23rd, 2013
Experienced User
I understand man. Is it the same from female to male transmission?
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replied July 23rd, 2013
Extremely eHealthy
It is harder for a man to get it from a woman than vice versa - the medical articles support that. So since everyone here appears to be male, we have the highest chance of transmitting it to someone else, and in my case, I've done that dozens of times.
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replied July 23rd, 2013
Experienced User
Are there guys on here who have had minimal intrrcourse and caught this? I keep saying this but all the other guys this girl slept with aren't affected.. It's just me..
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replied July 24th, 2013
Extremely eHealthy
WK,

Like I said before, not all people who are exposed are infected, and not all people who are infected have symptoms. For example, Scared's pal didn't get sick from the same girl that got Scared sick. I know that could drive you crazy, but that's how viral infections work. I believe that Scared is in your 'minimal intercourse' category also.

The women that I have had sex with screw everyone, so you can imagine how many people are infected. And like I said, I know this illness can drive you crazy, every day I have to ask myself how could this be happening to all of us, it's like this is all a big nightmare that I am hoping to wake up from. Imagine if you didn't know us, and you were really alone in your suffering, that would be much worse, so please take some comfort in that.

Best wishes.
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replied July 23rd, 2013
Experienced User
Could it be possible we have had this longer then we have expected and not have known about it?
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replied July 23rd, 2013
Experienced User
I only ask is because I remember I used to feel dizzy before my exposure and my vision wasn't the best. But my exposure before that would have been 6 months before last exposure
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replied July 23rd, 2013
Experienced User
..
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replied July 25th, 2013
I suggest that you should ask the government for help!!!I think it's the best way !
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replied July 25th, 2013
Extremely eHealthy
TN,

Unfortunately the government doesn't care.

Best wishes.
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