Debbie Johnson, P.A.
with a patient

Do you have questions about treatment options, new therapies or drugs interactions and side-effects?

Debbie Johnson, our Medical Advisor, can help.

Email to:

DearDebbie@Women-Alive.org

and Debbie will personally answer to your question.

Including your T-cell, viral load and medication (past and present) information may help Debbie to provide an answer better fitted to your question.

Previous questions and answers:
(names and any possibly identifying information
where omitted to protect our visitors anonymity)

Questions: Dear Debbie Answers:

Mammogram

Dear Debbie,
I am 48, and have been HIV+ for 7 years. Recently, I moved to another state, and of course, a new Dr.
I was overdue for my yearly mammogram, and when I requested it, my Dr (actually a Male PA) told me that it wasn't indicated for me to have a yearly one, until after age 50.
I disagreed with him for 3 reasons.
#1 HIV + woman over 40
#2 Paternal grandmother died of Breast cancer
#3 my past 2 mammos had to be partially repeated, to take a closer look at some suspicious "spots" in my xrays--which thankfully disappeared in the 2nd go round.

It seems to me, that when I first became HIV+ that I read over the standards of care dissected it, and imprinted in my mind, the monitoring that I needed on a regular basis, along with vaccinations and treatment.

I can't seem to find the Standards of Care that deals with that part of care, only on antiretroviral treatment therapy. I am on Kaiser insurance, and I questioned him, if that was a Kaiser standard or a national HIV care standard.

 

Thanks for writing! First I would like to congratulate you on being such an advocate for your own health care, you go girl!

My response to your question would be first that there is currently no available data that would suggest that women who are HIV+ are at an increase risk of developing breast cancer. Cervical cancer, absolutely and the current guidelines recommend PAP screening every 6-12 months (most clinics do PAP every 6 months). Since an increase in breast cancer has not been reported, routine mammograms have not been recommended.

However, prevention guidelines suggest that all women have a baseline mammogram done in their 40's and then yearly mammograms after the age of 50. Now if you have a mother who had breast cancer, then the current recommendations are to begin routine mammograms every year starting 5 years before the age your mother was diagnosed. If you have had an abnormal mammogram in the past and your grandmother had breast cancer (depending on her age) I would repeat the mammogram, just to be on the safe side.

I was diagnosed with breast cancer at the age of 47 and I have absolutely no family history for any type of cancer, I found my cancer during a routine monthly self-breast examination. Routine, monthly self breast examinations are the most important preventive measure that women can do and women are generally the first to find suspicious, palpable mass, not the mammogram.

I would explain your concerns about having abnormal mammograms in the past and ask our provider to repeat it to confirm that everything is fine. If he refuses, ask him again and again, and again until you are happy with the end results. Good luck and let me know what happens. (Sept/2003)

Skin Problems

Dear Debbie,
I live in Denmark and was diagnosed with HIV, 10 years ago and I have been on medication since. Five years ago I started having sores all over my body and the doctors can't really find out what is the cause. I have been to all kinds of tests.
Have you come across this problem before? What can I do about it. It is getting on my nerves.

 

First, I would like to thank you for writing and to let you know that I can only make some suggestions as I have not seen your sores, nor do I know any more about you than what you have written. I can only imagine how frustrated you must be in dealing with this problem.

HIV can be found everywhere, in every organ including the skin and many HIV positive people suffer from a sundry of skin problems. You may need to have a biopsy done to aide in a final diagnosis. The sores could be from a reaction to one of the medications you are currently taking or it could be a fungal infection or it may even be eosiniphilic folliculitis, which may require the subject to take doxycycline or itraconazole. Have you seen a dermatologist?

I would also suggest that you see a mental health counselor because, overtime, your situation can really begin to cause you to become depressed and depression can lead to missed medication dosing and possibility HIV resistance.

Keep your chin up and keep looking for a solution, even if you have to go to every medical clinic in town. Don't settle for "I don't know what it is," That's not a good answer. (Oct/2003)

 

I had developed some type of rash under by breasts and under by belly (slightly saggy).
My doctors have suggested medicated powder and also have prescribed hydrocorstisone and an antifungal. These remedies have not helped. It keeps coming back. I am HIV+ and HCV+ and not currently on any meds.
Viral load is 24,000. Any suggestions will be appreciated.

 

Thanks for writing. You didn't include your T-cell count, so it is difficult to know just by your viral load whether or not you need to be on antiretroviral medications. If your T-cell count is above 350, then by CDC guidelines you don't need to be on ARV and in fact might respond better to HCV treatment. In order to treat your HCV, you should know what your HCV viral RNA is and your genotype. But several studies have shown that if you have high T-cells, your success rate of perhaps clearing the HCV is much better than if your T-cell were low.

Moving on to your rash. It sounds like you are big breasted and with a saggy belly it becomes a perfect place for fungus to grow. Dermophities love to grow in dark, most, hot areas and that is why when you use the creams it clears up and then returns. You should continue to use the anti-fungal and the hydrocortisone for at least 3-5 days past the time that you notice the rash is gone and then use a powder to try and keep those areas dry.

Unfortunately, there isn't any better information or treatment. You could take anti-fungal pills, but they can be hard on your liver, lead to the development of resistance later down the line and are very expensive. I hope these answers help, let me know and good luck. (June/2004)

HIV and Pregnancy

My husband and I have been HIV positive for apprx. 2 years. We have done no additional tests to date and we are not on medication. We have not gone to a doctor as yet because we fear gross doscrimation by the public if this information was to be made known to the public. We live in a caribbean country and people living with hiv and aids are grossly rejected.
We are really longing to have a baby together and are aware of the grave risks invoved to us and the baby. Could you help us by giving us some information as to whether or not we can have children and if and where we can find a good OBYGYN and obtain treatment in another country? Thank You .

 

I can only image how difficult you life must be living in a country that still tolerates so much discrimination and fear about a disease that can be controlled with appropriate medications and treatment. Without knowing what your T-cell count and viral load, it makes it difficult to give you advise.

I can tell you that without medications, the lower you T-cell count is and the higher your viral load is, the greater your chances are of transmitting the HIV infection to your unborn child.

The risk of HIV infection can range from 19% to 43%. With correct medications, the risk of HIV transmission to your unborn child can be lowered to less than 8%. It would be important that if you and your husband decide to become pregnant that you use condoms (or other non-penetrating activity) during the pregnancy in order to prevent increasing your viral load and perhaps increasing the risk for your baby becoming HIV+.

You may have some difficulty gaining entrance into a country that may be able to supply you and your husband with medications. The US has programs for individuals that can not afford medical care, which would also include medications and assess OBGYN care.

Sometimes we all have to make decisions that may be difficult, but as long as you are aware of the potential for transmission, are willing to care for a child that may be born HIV+ and have a plan in place to provide care for the baby in the event something happens to you or your husband then you will make an informed decision (we should all be prepared irregardless of our HIV status).

I hope this information has helped. Please keep in touch and let me know how things are going and if I can help you further. (Dec/2003)

HIV Re-infection Prevention

I have a question. I work with women who are HIV + or have AIDS and quite concerned with the risk that these women have of acquiring further infections by engaging in unprotected sex and/or other risky behaviors (etc. drugs, ETOH, etc.) they are using HAART medications but are beginning to think that they won't acquire anymore problems b/c they are on these meds. Do you have any information regarding this issue that I can share with them? thank you.

 

Thanks for writing about this very important topic. Even through we have great medications available and the morbidity (illness) and mortality (death) have decreased dramatically, it is very important for women to continue to protect themselves.

Any person who is HIV infected has a compromised immune system that leaves them at a greater risk for infection. Furthermore, there is a disconnect between what we measure in the plasma (HIV RNA or viral load) and what is happening in the genital track. In other words, the patient may have an undetectable HIV RNA (viral load) in her blood, but not in her vaginal fluids and the same is true for men.

Each patient can other be responsible for themselves in reference to taking their medication everyday. Being adherent to your antiretroviral medications is the only way to prevent the development of resistant HIV We must all protect ourselves from potential re-infection with another strain of HIV , which could lead to medication failure. In the past we use to think HIV re-infection (getting another strain of HIV or a strain that may be resistant to medications) was just a theory, but we now have several case reports of this occurring.

So, it is very dangerous to engage in unprotected sexual activity, especially to the woman who are compliant with her medications. These women put themselves in a position of not only acquiring a sexually transmitted disease, but also another strain of HIV. We all need to be responsible and protect ourselves by using condom (either female or male) while engaging in sexual penetration, especially women who are reservoirs. We need more educators who ask these types of questions and you place a very important role in getting the correct information out there. Keep up the good work. (Jan/2004)

HIV and Menopause

I've been HIV positive for 18 yrs and just started to take meds in April 2002..
I had something called the Burning Mouth Syndrome, and thought it had to do with being positive... come to find out its part of being peri-menopausal...but it did make me go on meds anyway...
I shouldn't have waited so long, but I felt great...until the menopause kicked in...((sigh))
My t-cells were 27...and I felt horrid... I am also going though my changes..
I went 16 months without a period, then had it for 2 months in a row for 6 days..
Now its been 3 months and no period again...
My question is...Why is my sex drive down?
I am very dry in the vaginal area and its hard for me to have sex. In fact, I don't even crave it...
I was wondering if its the meds or going though menopause???
I want to be sexual with my partner again, but haven't the urge...
What do I do to change that???

 

I know how you feel, going through menopause can be pretty tough. As your hormones change, so does your vaginal moistness and sex drive. The jury is still out in regards to offering hormone replacement due to the recent findings in a large clinical trial. The results of the study suggests there is an increase risk of developing breast cancer in those women who took hormone replacement (estrogen/progesterone). At this point in time, the arm using only estrogen replacement in women who have had hysterectomies is still ongoing. But for those of us who still have
our uterus, using estrogen without progesterone is not an option.
Estrogen only can increase the risk of developing endometrial cancer (sometimes we just can't win).

There are a couple things that you can do, the first would be to use a vaginal cream with estrogen to help treat/prevent vaginal atrophy or use a water based lubricate each time you have sexual intercourse (with a condom).

There have been several reports that suggest that women who are HIV infected may have more problems with their menses and/or may experience early menopause. Menopause is not a side effect of your antiretroviral therapy, but I think as time moves on and we learn more about women and HIV, ARV may contribute to changes in our hormones. But at this time there isn't any literature that I know of that supports ARV causing hormone imbalance in women. There is more and more literature that
suggests that HIV and possibility ARV may adversely affect men and their ability to sexually function, but there is little information about women and HIV.

Lastly, many women experience a dip in libido while their hormones are changing. Talk to your health care provider and ask them about some of your options. If you need to gain weight, you may think about a low dose of nandrolone (male hormone which has less 2nd sexual side effects). Nandrolone at 50-100mg every 2 weeks can increase your libido and help you to gain muscle mass. Other suggestions include taking care of yourself, eating good balanced meals, take a vitamin once a day, decrease your stress, exercise, stop smoking and be compliant with your ARV. I hope this helps. Let me know what you decide to do and how it
works.(Jan/2004)

Vitamins

How can you tell if you have overdosed on Vitamin B6 and what can you do about it?

 

Pyridoxine (vitamin B6) is not safe in large doses. Large doses can
cause a peripheral neuropathy (pain, numbness or tingling in your feet or hands) despite the fact that vitamin B6 is a water-soluble vitamin (the body doesn't store vitamin B6, what you don't use is cleared out of the kidneys).

In a study done in 172 women of whom 60% had neurological symptoms, which disappeared when B6 was withdrawn and reappeared in 4 cases when B6 was restarted. The symptoms were paraesthesia (numbness), hyperaesthesia (pain, tingling), bone pains, muscle weakness, numbness and fasciculation (fine muscle spasms), most marked on the extremities and predominantly bilateral (in both feet) unless there was a history of previous trauma to the limb.

Vitamin B6 is usually given along with the TB medication isoniazid (IHN) but in lower doses of 10-50 mg per day. The majority of vitamin B6 toxicities occurred in individuals who were taking 90-100mg or more over time. B6 is essential in preventing neuropathies when taking INH, but taking too much can also be bad and cause neuropathies. Let me know if you need further information. (Feb/2004)

Genital Herpes

Dear Debbie, I started dating someone who told me (after 4 weeks) that he has had herpes for 26 years. By the time he told me, we had had oral sex on several occasions and I had swallowed semen . He has not had a break out in 18 months. Can I only catch herpes from him when he is broken out...or is he contagious 100 % of the time? Please help. I can't find this
answer.

 

Genital herpes is the most common cause of genital ulceration in United States. Herpes (HSV) type 1 is usually found on the mouth (cold sores) and HSV 2 is generally found on the genitals (but not always).

Infection with HSV is lifelong because the virus lives in the nerve root ganglia (that is why it always infects the same spot). There are antibody tests that can be done, but they really serve no purpose, because either you have it or you don't! (unless you are pregnant)

Transmission generally only happens when there is direct contact with an infected lesion or secretions, but new studies suggest that transmission can also happen during asymptomatic viral shedding (the virus is present, but there isn't an ulceration present).

So the important thing is to always protect yourself by using a condom. 20-25% of sexually active young adults in the US are infected with HSV-2 with approximately 5-8 outbreaks per year in the beginning and then decreasing to less than two per year after 5-8 years. The time it takes from the exposure to an outbreak can be a few days to a few weeks and can last 3-5 days. A
treatment is available, Acyclovir and it can be used for both a
treatment or to prevent outbreaks. I hope this helps. Thanks for
writing. (Feb/2004)

In Vitro Fertilization

I have been researching a paper on ethical issues involved in offering in vitro fertilization services to couples with HIV and have not been able to find much information on the topic.
What information I have found has been either old or not from reliable sources.

 

There is very little information about artificial in vitro fertilization, most because of the fear of HIV infection. My understanding is that Japan has probably the most advance research on this subject and have tha transmission rate down to 1:3 million. The fear is that if the woman becomes pregnant (and she is HIV-) and also becomes HIV+, the baby has a hhigher probability of also becoming HIV+ because of the high viral replication that occurs when a person is going through seroconversion (HIV- to HIV+).

In the State of California, it is against the law to conduct in vitro fertilization between sero-discordant couples and yet in New York there is one in vitro fertility clinic that is offering services at a very high rate of $10,000 or more.

It is a very delicate subject and that is probably why you haven't heard back from anyone. More information is becoming available in the last several years about in vitro fertilization and HIV transmission.

In one study reported in the American Journal of Perinatology 20(6):305-11, 2003 Aug. out of 25 discordant couples who underwent in vitro fertilization there were no documented seroconvertion in either mom or the babies at 3 months.

The clinics which provide assisted reproductive technology (ART) are guided by general guidelines set forth by the American Society for Reproductive Medicine and its Ethics Committee. (Mar/2004)

What is the latest estimate of rate of transmission between an infected pregnant woman and her child? I have read between 1% and 4%.

Before ART, the transmission rates run between 19 and 43% depending on the cohort or article you read about. The transmission rate with ART is down to about 2 to 4%, in other words, the mother has about a 98% chance of having a healthy, non-HIV infected baby.

New data about pregnancy also shows that if the mother's HIV RNA can be decreased to < 1000, that there is a significant benefit. (Mar/2004)

With the latest drugs now in use, what is the life expectancy of a child prenatally infected with HIV? Is it the same as an adult, about 20 years? I have read some articles which say it is shorter because HIV interferes with the growing up processes, especially during adolescence.

I can tell you that even before all of the current drugs that are now available, many children born with HIV are now young adults thinking about getting married and having children.

The exact number of years if unknown. I have read literature that suggests > 30 years, if the patient takes ART and remains undetectable. Certainly there are less medications available for children than adults, but it is slowly changing. It is dealing with the difficulties of trying to get a young child to take their medications every day that is the most complicated. (Mar/2004)

Do you know if in vitro clinics in the USA offer their services to
HIV infected couples? (It is usually one or the other, I have never heard of both parents being infected and seeking IVF). Do you know if the technique developed overseas called sperm washing has been approved for use here in the USA? That technique along with Intro Cytoplasmic Sperm Injection are said to bring the risk to the uninfected mother down to about zero.

Do you know if any health insurance companies, the few who offer limited coverage of IVF, allow HIV positive couples to seek IVF?

There have been cases of two HIV infected males trying to find serogate women who would consider becoming pregnant, but again, there is not a lot of information. Sperm washing has to do with the assumption that HIV is located in the cells around the sperm, not the sperm cells thenselves. So you wash as much of the surrounding cells and fluid away from the sperm as can be done with the assumption that the risk of HIV transmission becomes less of a risk.

Yes, sperm washing is being done in the United States, depending on the State and its laws around HIV and in vitro fertilization. Again, the Japanese are much more advanced in this arena.

Reference Abstracts:

  1. Establishing a clinical program for HIV Seropositive men to father seronegative children by means of in vitro fertilization with intracytoplasmic sperm injection. Am J Obstet Gynecol. 2002 Oct; 187 (4):1121
  2. Reproductive assistance to HIV-discordant couples -- the German approach. European Journal of Medical Research. 6(6):259-62, 2001 Jun 27.
  3. Infections in IVF: review and guidelines. Human reproduction update. 6(5):432-41, 2000 OCT-SEPT.
  4. Gestational surrogacy for HIV seropositive sperm donor: what are the ethics? JOUR OF THE AM MED WOMENS ASSOC 58(3):138-40, 2003 SUMMER.
  5. Obstetric outcomes of HIV serodiscordant couples following vitro fertilization with intracytoplasmic sperm injection.
    AM JOUR OF PERINATOLOGY. 20(6):305-11, 2003 AUG.

I hope this helps you answer some of the questions. There is a lot of controversy over this subject and a State to State difference on what is available and where. (Mar/2004)

Vaginal discharge

I have been living with HIV for almost 9 years (dx 11/95), and I just began having this discharge that is totally freaky at the end of 2003 or first of 2004. It's like SNOT. When I urinate, it comes out of my vagina. I've been treated for trich (my idea--just to try it and see if Flagyl would do it), bacterial vag with the normal meds, and vaginal yeast (with Diflucan) and nothing seems to make this go away--it keeps coming back! I've been tender in my abdomen for over a year, but there's been no mention of PID or any other cervical abnormality after my pap smear--I am completely perplexed.
It is not really smelly--but sometimes it's clear and sometimes kind of whitish, with the consistency of snot---ewwwww.
I appreciate any time given to and consideration of my request, and any possible recommendations.

 

I have to admit that I am not a GYN specialist. But I can tell you that vaginal discharge is normal and it changes with hormones, menopause and medications.

After you stop your menses, your discharge will be very little for a few days, in fact your vaginal will be very dry and you may need to use a lubricate. Day 3-8or 9, your vaginal discharge will become clear like an egg white (this is when you fertile and can become pregnant). On day 10-12 or so, your vaginal secretion will become thick, sometimes yellow and looks like "snot" and then the whole process starts again.

Again, many times what you eat, the meds that you take can change the consistence of your vaginal discharge. If you had PID, you would have abdominal pain along with a discharge and in fact you wouldn't be able to even have your cervix touched during a routine PAP exam.

The only other thing is if you were treated with flagyl 2 grams once, it would not be enough to treat bacterial vaginosis. You need to take flagyl 500mg three times a day for 7 days. But I am going to bet that what you are experiencing is just a variation in your vaginal discharge, especially if all the other tests are negative. I hope this was helpful, although it may not be the answer you were looking for. (May/2004)

HIV/Hepatitis C

I've been positive since 86 with Hep C. My T-cell were 31 when tested then, now 400 - both undetectable.
With Hep C and HIV, my question is I've been on interferon for 1 year and he wants me to be on it for another 6 months. My T-cell has fallen to 92. He told me that they will go up once I am finished with the treatment. My percentage is 22. I've been in recovery for 2 years, July 4th.

 

Congratulations on all of your accomplishments!!! You have come from down under and through hard work demonstrated how to be successful.

The truth for the treatment of HCV is that we may not be able to clear the virus. There is very little data available that shows that we can clear the virus after 12 months, 18 months or more.

Your provider is right, that your T-cells should rebound after finishing your treatment, I am just not sure that there is a benefit. If your T-cell drop much lower, you may be at risk of developing many other OIs. The good thing is that your percentages are still very high, which is a good sign since ribivirin primarily affects your white blood cell count.

If you are feeling good, not losing weight and feel comfortable with your provider, hang out for another 6 months and see what happens. You are braving a new frontier and could provide additional information for others who are also infected with HCV. If you T-cell count continues to decrease, I would opt for stopping treatment and following your HCV RNA. By the way, what is your genotype? (June/2004)

Medication Desicions

I am a 47 yr old woman diagnosed full blown in 1996 responded well to meds t-cells went from 119 to high range 800 and undetectable now I have had a detectable viral load for well over a year and t-cells keep dropping I am at 230 viral load is 18,000 I feel like I am on a sinking ship my doc is very smart but not much of a talker we keep doing this wait and see thing I am frustrated haven't felt good for long time tired and achy all the time it is hard to find a doc that treats only woman any suggestions?

 

I am not sure where you live, but the problem that you have described happens even in big cities such as New York or Los Angeles. Some health care providers are not as caring as others and so my recommendation is that you as a patient need to be actively involved in your health care.

You need to read, prepare questions for each office visit and not leave until your questions are answered. Unfortunately you can not always do this nicely, but it is your disease and if mistakes are made, it is your life that is affected! I am not sure what medications you are on, but if you have a detectable viral load now, it means that you have began to develop resistance and the longer that you are on these medications, the more resistance you will develop.

It sounds like it was your first combination of ARV and so you should have lots of choice available. But if you develop a 69 insertion, you will be resistant to all of the NRTIs. So, I am not sure what your physician is waiting for?

Send me your ARV combination and I will let you know what combinations you may do well with. Do not be satisfied with the answer of lets wait and see, it is not his or her disease. You need to do something now rather than later as you stated that T-cell count has dropped from 800 to around 200. Be an activist! Advocate for yourself and tell your physician what you want and it isn't wait and see. Send me additional information. (June/2004)

False test results

In HIV/AIDS case, in the partner life, is there a probability to be negative & positive result? Could you explain about this?

 

The frequency of false-positive HIV serology (both EIA and Western Blot) was reported to range from 0.0004% to 0.0007%. Changes in the interpretive criteria instituted since those reports were published have led to an even lower frequency. Causes of false-positive results include:

  • Autoantibodies: A single case was reported in which a false-positive serology was ascribed to autoantibodies in a patient with lupus erythematousus and end-stage renal disease.
  • HIV vaccine: HIV vaccines are the most common cause of false positive EIA tests, and 0% to 44% had positive WB, depending on the antigen used in the vaccine.
  • Factitious HIV infection: This refers to patients who report a history of a positive test that is erroneous, due to either misunderstanding or an intest to deceived.
  • Technical or clerical error.
  • Indeterminate results account for 4% to 20% of WB assays with positive bands for HIV-1 proteins. Causes of indeterminate results include:
    • Serologic tests in the process of seroconversion; anti-p24 is usually the first antibody to appear.
    • Cross-reacting nonspecific antibodies seen with collagen-vascular disease, autoimmune diseases, lymphoma, liver disease, injection drug use, multiple sclerosis, parity or recent immunization.
    • Infection with O strain or HIV-2
    • HIV vaccine recipients
    • Technical or clerical error

Retesting in 3 months for a false-positive is important. In order to have a positive Western Blot, you must have a gp41+gp120/160 or p24 + gp120/160. The accuracy of the test show sensitivity and specificity of > 98%. I hope this helps, let me know. (June/2004)

 

DEBBIE JOHNSON, NP, PA-C
Primary Care in HIV at 5P21/Rand Schrader Clinic. Co-Investigator in the USC AIDS Clinical Trials Group. Graduated from LAC Nursing School 1991, Certified Nurse Practitioner, 1995. Graduated from College of Osteopathic Medicine of the Pacific (COMP) as a Physician Assistant, 1993. Voluntary Faculty at both USC and COMP. Clinical Instructor for the AETC (AIDS Educational Training Center). Volunteer Medical Advisor for Women Alive.