Information for People Testing
Positive for HTLV-I/II

What is the HTLV-I/II Virus?

There are two types of viruses called Human T-lymphotropic viruses, both of which can infect humans. These viruses are different from the HIV virus which is the cause of AIDS. HTLV-I/II does not cause AIDS. Screening of the U.S. blood supply began in 1988 for the HTLV-I/II virus. People testing positive for HTLV-I/II are no longer eligible to be blood donors.

The fact that your blood has shown evidence of infection with HTLV-I/II does not mean that you have or will have any disease. Very few of those infected with the virus (2-4%) will ever become sick.

It is important for you to be aware of your infection for two reasons:

• In a small percentage of people infected with HTLV-I/II rare medical conditions may be found. It is important to inform your medical provider so that he or she may take this into consideration if you were to become ill.
• It is possible to transmit HTLV-I/II virus to others. You may be able to prevent transmission by taking certain precautions.

How do you know if you are infected with HTLV-I/II?

A blood test is done and tested for antibodies to HTLV-I/II. If this screening test is positive, the results will be confirmed by another test called a Western Blot. Antibodies are proteins produced by the body as part of its normal defense against infection. The presence of antibodies to a particular virus indicates that a person was infected with this virus at some point in their live. It does not mean that they are currently sick from this particular virus.

Who is at risk for becoming infected with HTLV-I/II?

HTLV-I:

People from Japan, the Caribbean, Melanesia and parts of Africa and South America seem to have a higher rate of HTLV-I infection.

HTLV-II:

HTLV-II is very common among injecting drug users in both the U.S. And Europe. The virus is also present in certain Native American populations.

How do you become infected?

• Mother to child (usually through breast-feeding) . HTLV-I is more often transmitted this way.
• Sexual contact with an infected person
• Blood transfusions with infected blood (testing of blood donors began in 1988)
• Sharing of contaminated needles
• HTLV-I/II is not transmitted by casual contact

What does infection with HTLV-I/II mean?

Infection means that the HTLV-I/II virus is in your blood. Most people who are infected will never become sick.

If I am infected, how long with the virus be in my body?

Infection with the virus is considered to be lifelong.

Does the HTLV-I/II virus cause any specific disease?

As stated previously only a very small percentage of people ( 2-4% ) infected with this virus will ever develop symptoms or disease.

Two diseases have been associated with HTLV-I virus:

• Adult T-Cell Leukemia/Lymphoma (a rare type of blood disease).
• HTLV Associated Myelopathy (a chronic disease affecting nerves of the spinal cords)

There have been no diseases definitely associated with the HTLV-II virus at this time.

Is any medical treatment necessary because of my positive test?

Currently, no medical treatment is necessary for people who have no symptoms due to HTLV-I/II. Symptoms associated with adult T-cell leukemia may be: fatigue, anemia, bruising easily or a bleeding tendency. Symptoms of myelopathy, may be: weakness or stiffness in one or both legs, numbness or heaviness in the legs, burning sensations in the feet, loss of hearing, problems with urination. These symptoms be caused by other problems as well. An evaluation by your medical provider is necessary to determine the cause of these symptoms.

What should you do if you are positive for HTLV-I/II antibodies?

• Keep the information in perspective, and remember that most people never experience any symptoms or disease associated with the virus.
• As is good for everyone's health you should eat well, get adequate amounts of sleep, and avoid or minimize substances such as tobacco, alcohol, crack, heroin or other drugs not specifically prescribed for you. Having a healthy lifestyle maximizes your bodies ability to fight disease.
• Inform your medical provider about your HTLV-I/II test result. We will provide you with a copy for him/her. Have a medical examination, if you have not had one recently.

How to prevent transmission of HTLV-I/II to others:

HTLV-I/II CAN BE TRANSMITTED THROUGH BLOOD:

• Do not donate blood, tissue, sperm or body organs
• If you inject (shoot) drugs, do not share needles or syringes with anyone. If you do share "works" squirting bleach in and out of works twice and then rinsing twice with clean water before and after use reduces the risk of infection. You must do this each time you use them. Your counselor will provide you with information regarding drug treatment programs and needle exchange programs.
• Do not share toothbrushes or razors with anyone as they may have small amounts of blood on them.
• If you bleed onto a surface, disinfect with a freshly made mixture of one part bleach (Clorox) diluted with nine parts water.

HTLV-I/II CAN BE TRANSMITTED THROUGH SEXUAL CONTACT:

Practice safer-sex:

• use latex condoms and spermicide (do not use spermicide when pregnant) for vaginal and anal intercourse
• avoid sex while menstruating
• inform partners and suggest testing for them

HTLV-I/II CAN BE PASSED FROM MOTHER TO CHILD:

• Avoid breastfeeding infants as the virus may be transmitted through the mother's breastmilk.

CASUAL CONTACT DOES NOT PASS THE VIRUS FROM ONE PERSON TO ANOTHER:

• HTLV-I/II is not spread through talking, shaking hands, kissing on the cheek or hugging. The virus is not spread through the air or by sneezing or coughing.