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Certain HIV positive, but negative tests (Page 66)

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April 9th, 2013
Extremely eHealthy
HTLV-I is an exogenous human retrovirus that is a causative agent of adult T cell leukemia (ATL). In addition to the structural genes (gag, pol and env), a gene termed pX is postulated to be associated with leukemogenesis in ATL. Since no effective chemotherapy is currently available, it is important to find suitable therapeutic means against ATL. Here, we tested the inhibitory effect of antisense oligodeoxynucleotides (ODNs) on HTLV-I infection in different systems. ODNs were synthesized with the phosphorothioate backbone targeted to either structural genes or transactivator genes. The phosphorothioate ODNs were found to have two distinct target sites to exert their effect on HTLV-I infection: 1) Several ODNs, including sense ODNs and random oligomers, blocked syncytium formation induced by HTLV-I at a concentration of 0.1 microM. Their inhibitory effect on syncytium formation seemed to be exerted in a nonantisense manner, most probably due to their interaction with the cell membrane. 2) Efficient suppression by ODNs of gag gene expression after chemical induction was observed in HTLV-I-transformed T cells in an antisense manner. In this suppression, tax-antisense ODN showed virtually complete inhibition of gag protein expression, but not RNA expression, at the concentration of 0.1 microM, whereas tax-sense ODN displayed a weak inhibitory effect. Our results suggest that the influence of the phosphorothioate compound should be considered from the aspect of two separated mechanisms of antiviral activity, the effects on early (viral adsorption) and late (translation) phase infection.
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replied April 9th, 2013
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Human Tcell leukemia virus type 1 (HTLV1), the first retrovirus to be identified, is the etiological agent of an aggressive clonal malignancy of mature CD4+ T lymphocytes known as adult Tcell leukemia (ATL). The prognosis of ATL patients remains poor despite the availability of a number of clinical chemotherapy drugs. In addition, HTLV1infected and ATL cells possess an intrinsic resistance to anticancer drugs. 2'Deoxy2'fluoro4'azidocytidine (FNC) is a novel pyrimidine analog that is efficiently phosphorylated by cellular kinases and is a substrate for RNA and DNA polymerases. In the present study, the antiviral potential of FNC was investigated in HTLV1infected cell lines. Following FNC treatment, the HTLV1infected cells underwent G1 or S phase cell cycle arrest. FNC was also observed to reduce cell growth of the HTLV1infected cell lines in a dosedependent manner. Notably, FNC was found to efficiently inhibit the expression of the viral proteins, Tax and p19Gag, in a dose and timedependent manner. Treatment with FNC and the protein biosynthesis inhibitor, cycloheximide (CHX), accelerated the inhibition of viral protein synthesis in the HTLV1infected cells. Collectively, these results demonstrated the efficient antiretroviral effect of FNC in HTLV1infected cells and indicate that FNC may be utilized as a valuable therapy in HTLV1infected patients and those with ATL.
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replied April 10th, 2013
Experienced User
sorry to hear that ustas. wow a whole year now!
My legs and hips are killing me! I thought I was juust gonna accept my other symptoms and deal with life. But these joint problems got me really worried again. What can be affecting my body this much.. I was excersing on a regular basis. No running becuase my legs are weak and stiff. But I did eleptical. Now I can't even do that.. I really need to find a new doc. And figure this out.
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replied April 10th, 2013
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D-man,

My legs & hips were so bad that I couldn't even sleep! Now it's not so bad, but before it was bad.

Best wishes.
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replied April 12th, 2013
Experienced User
Hello everyone,

I would suggest everyone see a Gastoenterologist if you can especially everyone with the IBS symptoms. I'm to suffering alot of stomach pains and discomfort. Also look into Endocrine Disorders. I'm wondering if maybe some of us had a health problem brewing and was jut ignoring the symptoms and blaming it on their exposure. I'm not saying we didn't catch anything, because there's not a doubt in my mind this woman gave me something just a possibility some of us had something going on before the exposure that we were ignoring.

Here's a list of my current symptoms almost 17 months post exposure (11-25-11)

Itchy skin ( upper chest and collarbone and neck)
Random itching all over
Soar throat (lump feeling)
Redness in back of throat with moucus
Pain in liver area, feeling of heaviness in liver ( CT scan did show a leision in right lobe of liver,but to small to characterize)
Lots of abdominal pain and discomfort
Lump in abdomen just above belly button
Stools are shot (light colored, soft broken, sometimes dark green, diarrhea off and on, all different colors, foul smelling)
Bad Gas (smelly)
Back pain (middle and between shoulder blades)
Pain in kidney areas
Jaw pain and tenderness when pressing on jaws
Sore neck glands
Dark eyelids
Indigestion
Sore knees (pain behind knees comes and goes)
Sore calves (tender calves)
Sore legs
Itchy palms (especially after I take a shower)
Lines in fingernails
Wierd pimples on chest that come and go
Light sensitivity
Muscle pain
Muscle weakness
Muscle tenderness
Bruise more easily than I used to
Dry mouth
Fatigue
Depression ( think about suicide everyday)

The list goes on and on.

Tests I've done since the exposure:
13 CT Scans of abdomen and pelvis (liver leision appeared sept 12th 2012)
2 upper endoscopies
Colonoscopy
Gall Bladder removed November 28th 2012
Video pill endoscopy
5 Ultasounds of abdomen
Multiple chest x rays
Multiple abdomen x rays
MRI of spine
2 endoscopic ultrasounds
Multiple labs done ( WBC was low a couple times)
Elevated liver enzymes on 1 report (my ALT was 80 normal high is 45)
Throat scope 5x
MRI of brain 2x
Allergy skin test
Ultrasound of kidneys (showed multiple cysts)

I'll post more as I get them I have a ct scan of my chest in 2 more months. I'm sorry everyone is still going through tis misery and wish you all the best. Good night everyone.
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replied April 15th, 2013
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Scared,

Thanks for the updates on your testing, and for listing your symptoms - I share many of the same symptoms as you since my exposure (11-07-11, 18 days before yours):


1. Itchy skin, especially upper chest and collarbone and neck, and generally everywhere.

2. Sore throat (lump feeling)

3. Redness in back of throat with mucus, especially in the morning.

4. Pain in liver area, feeling of heaviness in liver - I have to emphasize this because in the beginning the liver pain was so bad that I couldn't even sleep on my side at night - not that the doctor cared at all. Now the pain comes & goes during the day. Since the liver is part of the lymphatic system, we have to keep in mind that what's attacking our liver is a lymphatic based disease, viral or otherwise.

5. Stools are shot - multi color and grainy, with occasional mucus, indicative of Candida / yeast infection. I eat a cup of yogurt for each morning to control the yeast (and the gas cause by the yeast). Please try doing the same.

6. Back and neck pain - the muscles on my neck & shoulders and back are rapidly shrinking as the disease consumes my muscles. Still pain in my lower back, ass, and legs. Also rectal pain about once a month that cause me to wake up & run to the bathroom, with no output.

7. Jaw pain is constant, along with cracking - again these are muscles that are shrinking but are necessary to eat, so they're constantly being replaced & destroyed.

8. Dark eyelids - perhaps the most prominent sign of this disease. I look like I am about to drop dead.

9. Flaky acne around the bridge of my nose - for the person who infected me, this became so severe that it required days of hospitalization and almost cause blindness because it attacked the eyes. You can imagine how horrified I was to know this and then wonder what will become of me.

10. Leg, hamstring, and calf pain.

11. Lines in fingernails

12. Weird pimples randomly everywhere.

13. Light sensitivity

14. Muscles shot - pain & weakness & tenderness.

15. Easily Bruised.

16. Fatigue

17. Depression - I think about how I did something stupid out of loneliness and how it cost me my health and my life.

My liver tests were also elevated, and again I will suggest that all of you try Swanson's Chinese Skullcap ($5 per bottle), and eat yogurt everyday. I am not saying that this is a cure, but if it eases your pain & suffering, and extends your life, all the better.

Best wishes.
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replied April 29th, 2013
Experienced User
Have you experienced really sore lymph nodes under your arms? my worst symptom right now is the lymph node pain and the persistent headache!
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replied April 28th, 2013
Experienced User
Hello man....I just came across this board as i have been experiencing some of the same symptoms as you, Casper, Tony and the others....i'm still chasing mine like you all are...i'll try to come back here to keep everyone posted..... I'll give you all a brief summary of my situation....

Early March 2013...3/03/13 I had protected sex with an ex girlfriend (turns out to be the worst mistake of my life). About a week after that occurrence, stomach problems begin.... diarrhea, stomach pains, etc...also noticed a boil on my back (like nothing I ever seen) boil went away but stomach issues persisted....first thing I thought once I remembered the sex with her was HIV. About to a month after that, everything else starts...I run to doctor about 4 weeks out take test for HIV..negative. I confront her about it, she goes to Dr and shows me HIV negative test. I don't believe her... anyway, here is a list of my current symptoms below which started about a month after sex with her....NO ISSUES PRIOR 3/3/13....

1. Persistent Headache
2. Muscle aches all over
3. joint and body pains all over intermittently
4. Weak feeling in arms and leg
5. body itching all over and noticeably itching on chest near collar bone and neck area
6. painful lymph nodes under arms
7. tight,stiff and sometimes painful neck
8. tight lymph nodes under chin (this has since gone away mostly)
9. burning skin sensation on back between shoulder blades
10.slight sore throat
11.Stools are shot (light colored, soft broken, sometimes dark green, all different colors, foul smelling)
12.Bad Gas (smelly)
13.Back pain lower left and right side
14.Pain in abdomen (lower left area most noticeably)
15.blurry vision but that has gone away
16.strange pimples on chest and back that come and go
17.Occasional nausea
18. Super Depression....thinking of hanging myself or blowing my head of everyday now


Test so far
HIV test at 4 and 6 weeks, both negative...still have more to go here at least until 12 weeks out then 6 monthes...
Hep test for all three
full blood test
stool samples
blood cultures
full STD tests

Nothing found so far....my last doctor said she believes its all in my head....she told me I don't have HIV and may have encountered some virus but my symptoms are from anxiety.....Brutal.....

Another appointed coming in May...
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replied April 14th, 2013
Experienced User
Hey guys,

Any updates? Where's everyone? Don't give up make these drs. do their jobs. I hope everyone is feeling better.
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replied April 15th, 2013
Extremely eHealthy
Scared,

To answer your question, most people can't see page 66 of this forum, so they're missing everything we've written here. Thanks again for talking to me on the phone, like you said in your post, this is a real disease, we are NOT crazy, and hopefully someday the doctors will be able to categorize this AND have a reliable test for it.

Best wishes.
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replied April 15th, 2013
Extremely eHealthy
PS: my current count of friends with this disease is 45 (or more). I don't know how many of you have infected how many others, but this disease is real. And out of those 45, no one's willing to discuss this or even admit that they're sick, even though it's obvious to anyone that they are.
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replied April 15th, 2013
Experienced User
Has anyone been tested for hanta virus?
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replied April 15th, 2013
Extremely eHealthy
WS,

No - if any of us had Hanta Virus, we'd be dead.

Best wishes.
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replied April 16th, 2013
Extremely eHealthy
The HTLV serological window period is not clearly known. The period of seroconvertion is
related to the route of transmission and with the level of infected cells received in this event.
The virus transmission through blood transfusion is considered the most efficient route and
the seroconvertion of the recipients is around two months (Manns et al., 1992), while for the
other routes of transmission the seroconvertion can reach six months or more. There are no
reports of infected individuals who had viral clearance.
For serological diagnosis of HTLV-1/2 is recommended one or two concomitant enzyme
immunoassays with different formats and antigen composition followed by a confirmatory
test in case of sample be reactive. The results of ELISA test can be: reactive, non-reactive or
indeterminate (absorbance value around to cut-off). The sample is usually tested in
triplicate, and if two or three replicates are reactive, a new blood collection shoul be realize
and the new sample tested by ELISA. The reactivity in two or three replicates implicates in
the use of a confirmatory test, such as Western Blot.
Western blot is a confirmatory assay used to test samples that were repeatedly reactives in
screening tests. Commercial tests normally use as antigens viral lysate of HTLV-1, besides
HTLV-1 and HTLV-2 recombinant envelope proteins. The sample will be considered
seronegative if no reactivity to viral antigens is observed; indeterminate if are specific
reactivity for HTLV antigens but do not fulfill the criterion of seropositivity; and
seropositive if presents reactivity to all antigens defined by the manufacturer as positive
pattern. Depending on the reactivity profile, WB may be not able to define the diagnosis for
HTLV-1 or HTLV-2.
The high proportion of indeterminate results in the screening tests for HTLV infection has
been a challenge worldwide and has been an important problem faced by blood banks. The
improvement in the diagnosis for HTLV has been necessary to reduce inconclusive results
and to avoid unnecessary follow-up to define the status of infection (Martins et al., 2010;
Costa et al., 2011). In endemic areas, indeterminate WB results can range from 0.02% to 50%.
The causes of indeterminate WB tests and what is the medical importance of this status is
still not clear. Molecular tests can be useful to solve the majority of these inconclusive cases,
as well as to discriminate between HTLV-1 or HTLV-2 infection (Waters et al., 2011).
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replied April 29th, 2013
Experienced User
Why are you certain this is HTLV? These symptoms can be caused by alot of different causes....It seems like none of the people here have tested positive for HIV or HTLV...I feel like we've contracted something that has yet to be discovered...and thats really f*** up!
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replied April 16th, 2013
Experienced User
LKB1 tumor suppressor and salt-inducible kinases negatively regulate human T-cell leukemia virus type 1 transcription.
Tang HM, Gao WW, Chan CP, Siu YT, Wong CM, Kok KH, Ching YP, Takemori H, Jin DY.
Abstract
BACKGROUND:
Human T-cell leukemia virus type 1 (HTLV-1) causes adult T-cell leukemia (ATL). Treatment options are limited and prophylactic agents are not available. We have previously demonstrated an essential role for CREB-regulating transcriptional coactivators (CRTCs) in HTLV-1 transcription.
RESULTS:
In this study we report on the negative regulatory role of LKB1 tumor suppressor and salt-inducible kinases (SIKs) in the activation of HTLV-1 long terminal repeats (LTR) by the oncoprotein Tax. Activation of LKB1 and SIKs effectively blunted Tax activity in a phosphorylation-dependent manner, whereas compromising these kinases, but not AMP-dependent protein kinases, augmented Tax function. Activated LKB1 and SIKs associated with Tax and suppressed Tax-induced LTR activation by counteracting CRTCs and CREB. Enforced expression of LKB1 or SIK1 in cells transfected with HTLV-1 molecular clone pX1MT repressed proviral transcription. On the contrary, depletion of LKB1 in pX1MT-transfected cells and in HTLV-1-transformed T cells boosted the expression of Tax. Treatment of HTLV-1 transformed cells with metformin led to LKB1/SIK1 activation, reduction in Tax expression, and inhibition of cell proliferation.
CONCLUSIONS:
Our findings revealed a new function of LKB1 and SIKs as negative regulators of HTLV-1 transcription. Pharmaceutical activation of LKB1 and SIKs might be considered as a new strategy in anti-HTLV-1 and anti-ATL therapy.
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replied April 17th, 2013
Has anyone on this forum tested positive yet?
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replied April 17th, 2013
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Bresh,

No.

Best wishes.
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replied April 17th, 2013
Did anyone in the forum test positive for the virus yet?
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replied April 19th, 2013
Experienced User
Scared, Dman, Tony, I have all your symptoms if you go back and read all my posts. Hopefully some day we be able to figure out whats causing this to us.
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replied April 19th, 2013
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AdviseMe,

Absolutely we all have the same symptoms - there's no doubt in my mind that we all have the same disease. Some of us are sicker than others, I recall your suffering was severe, and Im sorry that we are all in such pain.

If you go back to the posts where we mentioned where we live, you can see that the geographic scope of this disease is huge - our forum members are not only all over the United States, but also in the Carribean and Europe.

We know that discussing & testing for HTLV is problematic, so we can use the more generic name for HTLV, HRES - HTLV Related Endogenous Sequence - using this term avoids the political and technical obstacles. Hopefully one of us can get access to the LIPS testing available in Brazil - I know this is a long shot, but clearly better testing is needed.

One glimmer of hope is medical research, which has turned up some hopeful treatments / cures for retroviruses:

(1) Azacytidine - a FDA approved drug for leukemia, published by Louis Mansky's group to show that it can lead to "lethal mutagenesis" in HIV infection, and is applicable to HTLV as well (as shown in the patient in Greece who was cured of HTLV after 8 months).

(2) Tofacitinib - recently approved for the treatment of arthritis, it has been shown to interfere with Janus Kinase (JAK), which is part of the life cycle of inflammation, which feeds HTLV.

(3) DRACO - shown to stop 15 viruses, potentially possible of curing ALL viruses. Not approved, but in the research stages.

Best wishes.
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replied April 20th, 2013
Experienced User
Saturday, April 20, 2013

Rejected for blood donation because of a false positive HTLV test?
After decades of blood donation I was rejected in 2010 because of a false positive HTLV I/II test.

I was annoyed, but not too concerned. I forgot about it until I came across old papers today, and a Google search showed that this has been a problem for others. So I'll explain here what I know of this topic, and why I wasn't worried.

This is a bit hard to explain -- even physicians have trouble with testing concepts. One way is by a simplified analogy made for this situation. Suppose you were looking for a killer and you knew they blue eyes and a unique DNA marker that's expensive to test for. Blue eyes would be your imperfect screening test; it has lousy accuracy but it's cheap. Next you test the blue eyed people with the expensive (and perfect) DNA test and you find your killer.

You could test everyone with the perfect "DNA Marker" test, but that would cost a lot of money. So the "blue eye" test is used first to save money.

In my case I tested positive on the cheap ("blue eye) screening test but negative on the good (but expensive) test.

So you'd think I could still donate blood -- but one problem is I may continue to test positive on the inaccurate screening test. That means each time I give blood the expensive test would have to be repeated. That's too much money to spend since we have enough blood donors. (We use far less blood that we used to.)

There are other procedural workarounds, but they all introduce cost and complexity. On the other hand, I'm still a listed bone marrow donor; in that case the economics justify the expensive test.

There's a reasonable discussion in Transfusion 2011 - Human T-lymphotropic virus antibody screening of... [Transfusion. 2011] - PubMed - NCBI. There were 130,000 false positive US donors between 1995 and 2008.

There's a better screening test on the market now so this problem should become less common. Blood centers may eventually decide to reinstate people previously rejected for HTLV positivity and rescreen, but that's probably more trouble than its worth.

If you think about this a bit, there are some other issues to consider. I wasn't much bothered by my false positive test because I'm a physician who works with these topics -- but I bet most of those 130,000 people were quite anxious. Money was spent on follow-up visits with expensive specialists and unnecessary retesting. Some may have had insurance problems. Arguably blood donors should be warned about the risks of false positive testing prior to donation -- so they have informed consent prior to the procedure.
Posted by John Gordon at 4/20/2013
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replied April 22nd, 2013
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I understand Mr. Gordon's lack of concern regarding HTLV, but then again he's apparently not experiencing any of the painful, crippling, and horrible symptoms that the rest of us have. Whether he is truly infected with HTLV without symptoms or is HTLV free still remains to be seen. He won't even take the "more expensive" tests to know for sure, but is listed as a bone marrow donor.

His statement that "we have enough blood donors" is completely false - blood (and donors) are always in short supply. Yes, many false positive HTLV tests occur, because of cross reactions to the flu vaccine, malaria, etc. However, those who are truly HTLV infected are also detected, so HTLV testing is necessary and important. The State of California STOPPED testing organ donations for HTLV, in order to be "in line" with other governmental agencies - this is a step backwards for both the spread of the disease and the unfortunate organ recipients. Ideally everyone with cancer, MS, or immune disorders should be tested for HTLV, otherwise we won't be able to measure HTLV's impact on the human race.

Best wishes.
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replied April 20th, 2013
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WO2013054866A1 Agent For Preventing Or Treating Htlv-i Associated Myelopathy #A61K #A61K31


go to w dot pat dot tc/WO2013054866A1
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replied April 22nd, 2013
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J Infect Dis 1993 Jul;168(1):262.
Abstract

To determine the relative prevalence of human T lymphotropic virus (HTLV) types I and II, type-specific polymerase chain reaction (PCR) was done on seropositive northern California blood donors. From October 1988 through March 1990, 67 (0.055%) of 122,517 blood donors had confirmed HTLV antibody. Seropositive donors were more likely to be middle-aged, female, and nonwhite than the overall donor base. PCR of samples from 30 HTLV-seropositive donors yielded 19 (63%) with HTLV-II and 9 (30%) with HTLV-I; 2 (7%) were repeatedly negative by PCR. HTLV-I-infected subjects had ancestry (n = 3), sexual contact (n = 3), or paternal military service in (n = 1) Japan or the Caribbean. HTLV-II carriers reported past intravenous drug abuse (n = 3) or sex with a drug user (n = 11). Two carriers of each type reported previous blood transfusions, and 1 HTLV-II carrier was a dentist with no other risk factors for retroviral infection.
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replied April 22nd, 2013
Experienced User
Hi all

Havent been here for a while.
Since the last time it has just stayed the same for most things.

What has changed since last time:

-Chronic burning feeling my stomach
- Throat problems got worse. EVERY night my nose gets blocked, super dry throat, insane amount of muscus builds up. During the day this gets a little bit better, especially when I am outside.
- A TON of skin problems.
- Every wound I get takes ages to heal, gets infected really easily.
An example: when my cat scratched me in the past, I got a perfect ''crust'' on it and a few days later it was gone. Nowadays: skin around wound hurts, gets infected, red, some liquid gets out of it.
- Summer time now, when I am outside my eyes hurt because of the sunlight. Even when Im watching the ground for example.
- A TON OF BROKEN BLOODVESSELS. I has spread out over my arms. It began with my middle--right arm. Now my whole left arm has broken bloodvessels as well, and also pigment loss around it. So I just have a ton of big white spots over my body. My arms just look ''infected'' lol.


I am just getting more depressed and depressed every day. I just don't see this getting better.
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replied April 22nd, 2013
Experienced User
Some other thing what happened a couple of months ago:
I got high fever, around 40 degrees, for a couple of days straight. (Normal temp. in morning tho). Some girl at a birthday was sick, so I probably got it from her.

That was most likely the first time I got fever when I was not a holiday in like ten years. The last time I ever got a fever was probably 5 years ago when I was on a holiday. The last time I got a fever while being at home was most likely at least 8 years ago.

Of course I might be ''searching'' for weird things now, but I still think it's kind of strange that I got a fever, especially such a high fever and such a long during fever period.
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replied April 22nd, 2013
Experienced User
Furthermore I am still worrying about hiv. Especially HIV 2 for example, or some other form of HIV. On some other forum there is a guy who says that it took him 1.5 years to get a positive test.
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replied April 23rd, 2013
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M,

You don't have HIV, neither type 1 nor type 2. We are all sick, and we all have similar symptoms, and none of us have HIV, even at the 1.5 year mark. If it will make you feel better, take the HIV antibody test, it will be negative. Meanwhile, what is making all of us sick does not have a valid test with a valid window.

Best wishes.
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replied April 22nd, 2013
Experienced User
Sorry for all the post but I cant edit my posts.

- I have not had a ''hard'' feeling stool/feces/poop, since it all started. Before it all started my poop etc was just hard/strong/not soft and wet.
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replied April 26th, 2013
Extremely eHealthy
Same here.
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replied April 23rd, 2013
you do not have hiv
you do not have hiv just be prayerful all will be well with you ok
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replied April 23rd, 2013
Extremely eHealthy
Amen Bede.
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replied April 24th, 2013
Experienced User
Hello Everyone,

I want everyone to google "Amebiasis" and read about it. I also forgot to mention in my last post I'm also experiencing muscle waisting in my back and my forearms. My shirts feel alot looser than they used to. My forearms are also skinnier than they were. I'm wondering if we have some kind of Parasite Infection, that's being overlooked by drs. They can also be spread sexually as well. Good luck guys, I wish you all the best and God Bless.
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replied April 24th, 2013
Extremely eHealthy
Scared,

I'm also experiencing wasting - arms, shoulders, back, and legs, even my rear has shrunk to the point that it's painful to sit. Literally my pants are falling off of me, along with the women I've infected. Yesterday I decided that I am going to start making appointments with hematologists so that I can get on the Azacytidine dosing that cured the patient in Greece, because I can't keep living like this. Like I said when we spoke on the phone, watching myself literally disappear along with my friends is more than I can tolerate. I'm the type of person who does something about a problem instead of just letting the problem continue. People are starting to notice the wasting, and asking me what's wrong with me, so you can imagine how scary that is. The Azacytidine is the way to go - not only did it cure the patient in Greece after 8 months, but also it was shown effective against HIV by Louis Mansky's group - not that we have HIV, but I'm making the point that it's a powerful FDA approved drug that's been around for fifty years and is used to 'correct' blood cells that are cancerous. I'm really pleading with you guys to please make an appointment with a hematologist and have the conversation about Azacytidine and HRES / HTLV, and have the tests done to show that your platelets are through the roof, your sedimentation rate is high, etc. Tell the doctor that we all have AIDS-like symptoms (Candida / yeast infection on the skin, eyes, throat, feces, wasting, etc) and need to get treated before we end up like Alberto in Italy who has full blown leukemia (Mycosis Fungoides) after being infected for 7 years - that means for most of us who are 1.5 years infected, we only have 5.5 more years before we become FATALLY ill. I'm not saying this to scare you guys as much as I am saying it to motivate you to treat the problem, not the symptoms. Please read the article on the patient in Greece who was treated with Azacytidine, the guy was 58 when he got sick and was cleared of the disease after 8 months of treatment. I'd rather do that than watch myself die. Print the Greek patient article out, along with the Louis Mansky article about Azacytidine treating HIV, and make a hematologist read both of them.

Scared, I know how much medical crap you've been through, and I know that I can't prove to you that this is HTLV, other than us all having the same symptoms as HTLV, but I need you to please believe me that this is HTLV - AdviseMe knows that this is HTLV too. I know that like Alberto, you are worried for your woman, Alberto infected his wife and his unborn child, and they are sick too. We have to do something to stop this epidemic, not only for our own lives, but for the lives of the people that we care about. I don't want my kids to come home someday with this disease, so if we don't make it known in the medical community now, this will be the next AIDS epidemic like in the late 70's. If nagging every hematologist until one of them caves in on the Azacytidine treatment is what's needed, then let's do it. I'll even fly from NJ to Florida to see a hematologist in your area, and I'll put you up at my place if I can find a doctor up here to treat us. Perhaps if we tag team a hematologist we can get the treatment that we need. We have to do something - just talking about rashes and clogged throats isn't going to get us anywhere. One of my girlfriends has the rash on her chest and face that required high powered antibiotics that cost THOUSANDS of dollars. Guys please keep an eye on your sex partner's health and report it to this forum, apparently women getting rashes on their chests is common in HTLV.

Everyone else - look for a hematologist, especially one that has recently graduated (younger doctors might be more open minded) and beg them to help you. Bernard Poiesz, the doctor who discovered HTLV, is still practicing in Syracuse NY, I might travel there to ask him for the Azacytidine treatment. If any of you are in the same geographic location, try to visit the doctor together to make the case for treatment together. Tell them that "George from New Jersey" knows this is HTLV. I know that sounds stupid, but we have to start pushing for treatment. Also push for the LIPS test from Brazil, where HTLV is a HUGE EPIDEMIC.

In case that same a-hole comes out of the woodwork to say that it's not HTLV, I'm telling you guys that it is HTLV, and I know that it's killing me and all of you too. Please let's find a hematologist and get treated before we realize that we are dropping dead one by one like that group ten years ago on the TheBody site.

Best wishes.
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replied April 28th, 2013
Experienced User
What group ten years ago started dying? and what killed them?
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replied April 28th, 2013
Extremely eHealthy
MGFCG,

The poster on the TheBody site wrote in to say that he & all of his friends were dropping dead one by one from NHL, which is caused by HTLV. The doctor wrote back that the poster should contact the CDC & let them know - like they give a crap. Alberto from Italy went full blown Mycosis Fungiodes / Leukemia after 7 years of being infected, we have to start coming up with an attack plan, whether it's flooding the CDC with phone calls and e-mails, or finding a doctor who will take blood from all of us and categorized this as a type of HTLV.

Best wishes.
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