How do I know if I have HTLV-1 or HTLV-2?

The vast majority (more than 95%) of people infected with HTLV-1/2 have little or no symptoms at all. If you believe that you have risk factors for infection, such as having a blood transfusion before 1988 in the United States, IV drug use, sex with an infected partner, or live in or are from an area where HTLV-1 or HTLV-2 are common, then you should talk to your doctor about being tested.

I’m not in a major risk group. How did I get HTLV?

Many people do not know when or how they acquired the infection. Since HTLV can be transmitted by breastfeeding and sexual activity, the virus may spread outside of recognized risk groups such as injection drug users or past blood transfusion recipients. People may not realize that they had a blood transfusion in the past or that a previous sex partner was HTLV positive.

 

If I have the virus, how can I avoid spreading HTLV-1/2 to others?

• Do not donate blood, plasma, organs or tissues. Men should not be sperm donors. Women should not be egg donors.
• If you use IV drugs, do not share needles or works with another person.
• Do not breastfeed your baby or any other baby, and do not donate your breast milk. (Women in developing countries who use infant formula instead of breast milk need to prepare the formula using clean water).
• If you have more than one sex partner, use condoms during sex to reduce the possibility of transmitting the virus to your partners. If you have only one sex partner, you and/or your partner should consider being tested for HTLV if either of you has risk factors for HTLV.

What if I am an HTLV positive and want to become pregnant?

Start by consulting with your obstetrician (OB/GYN doctor) and letting him/her know you are HTLV positive. They will be able to advise you on how to best minimize the risk of transmitting the virus to your baby. You should not breastfeed your baby as this is known to be a common route of infection. Discuss with your doctor alternatives to breastfeeding.

What if my husband is HTLV-positive and I am not and we want to have a baby? How can we avoid transmitting the virus to the baby and/or myself?

Talk to your obstetrician (OB/GYN doctor). They may have suggestions on how to become pregnant, while minimizing the risk of transmitting the virus to the mother and/or baby.

Is there a cure for HTLV-1 or HTLV-2?

No, not at this time. There are some treatments available for diseases associated with HTLV, such as ATL and HAM, but research on better treatment is needed.

Is there a vaccine for HTLV-1 or HTLV-2?

Presently, there are no vaccines available to prevent against HTLV-2 or HTLV-2 infection. Therefore to stop transmission from person to person, it is important to learn and understand the ways in which the viruses are spread and thereby reduce your risk of exposure.

Whom should I tell about my HTLV infection?

You may decide to discuss your HTLV infection and the information you have learned with your physician and also with people who are close to you. Some of these people may include family members and current or former sex partners. Younger children may also be infected. Communication with these people may be important since you might have given them the infection, or gotten it from one of them. They can be tested to find out if they are infected with HTLV-1/2. Your personal doctor should be able to help you arrange this.

My doctor told me I was HTLV positive, what do I need to ask?

After being diagnosed with HTLV-1/2, you will have many questions and you should address your concerns to your doctor; however, there are some basic questions that you can ask that will help insure that your medical care will be appropriately directed:

1. Ask if you were confirmed positive for HTLV-1/2 by use of a screening and a confirmatory test? It is important to clarify that your HTLV-1/2 test was “confirmed” positive with a “screening” test and a supplemental “confirmatory” test. Without the use of a confirmatory test, it is not possible to say whether or not an individual is truly infected. Some testing laboratories routinely use a screening test followed by a confirmatory test (when the screening test is positive); however, it is important to ask since some doctors may not order a confirmatory test.
2. Ask what type of HTLV infection you have, HTLV-1 or HTLV-2? Since HTLV-1 and HTLV-2 are each associated with different diseases and health outcomes, it is important to know which type of HTLV virus you have. Your risk factors (see Risk Factors) may suggest which HTLV type you have, but this is only an estimate. There are special tests that can determine which type you are infected with and your doctor should be able to arrange this testing for you.
3. Ask your doctor if he/she is familiar with the medical exams and tests needed to monitor for HTLV related diseases? Once you are diagnosed with HTLV-1 or HTLV-2, it is important that you are monitored routinely (at least annually) for symptoms related to HTLV diseases. If you have HTLV-1, you will need medical follow-up care on a regular basis. Your personal doctor will be able to monitor you by performing periodic blood tests and lymph node exams to screen for leukemia. Your doctor will also be able to conduct routine neurological exams to look for any signs of HTLV associated myelopathy (HAM). If you have HTLV-2, you will need an annual neurological exam to look for any signs of HTLV-associated myelopathy (HAM).

I spoke to my doctor, but he/she didn’t know much about HTLV. What should I do?

Due to the relative rarity of HTLV-1 and HTLV-2 viruses, particularly in the United States, it is not uncommon to find doctors who are unfamiliar with these infections. For this reason, The International Retrovirology Association is trying to make information about HTLV viruses and their health effects available to the scientific and medical community. It may be in your best interest to work together with your physician and help each other learn about HTLV-1/2. Bring any information you have found on the Internet or at the library to him/her. Your doctor can then look at advanced scientific literature and seek out experts in the field, if necessary.

Should I be getting treatment?

If you have tested positive for either HTLV-1 or HTLV-2 but have no symptoms of leukemia or myelopathy, you are what is known as a healthy carrier. No treatment is necessary if you have made your primary care physician aware of your HTLV infection and are being evaluated for any signs or symptoms, at least annually. If you have HTLV-1, you will need medical follow-up care on a regular basis. Your personal doctor will be able to monitor you by performing periodic blood tests and lymph node exams to screen for leukemia. Your doctor will also be able to conduct routine neurological exams to look for any signs of HTLV-associated myelopathy (HAM). If you have HTLV-2, you will need an annual neurological exam to look for any signs of HTLV associated myelopathy (HAM). Adult T-cell leukemia (ATL) is currently being managed with chemotherapy, including AZT and interferon. HTLV associated myelopathy (HAM) is currently being treated with anti-inflammatory and immunosuppressant medications, including Predisone and Interferon.

What is being done to learn more about HTLV-1 and HTLV-2?

Medical researchers and scientists are involved in studies to learn more about HTLV-1/2 infections. These studies seek to increase our knowledge about how these viruses spread, what happens to people who are infected and what treatments can control and manage diseases related to HTLV-1 and HTLV-2. We have given you the best information we currently have. It is possible that this information will be changed and updated as we learn more from studies currently being conducted. It may also be helpful to talk with your personal doctor, who may be able to guide you in appropriate health care.