Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol
Read Now: TheBodyPRO.com Covers AIDS 2014
   
Ask the Experts About

Safe Sex and HIV PreventionSafe Sex and HIV Prevention
           
Rollover images to visit our other forums!
Recent AnswersAsk a Question
  
  • Email Email
  • Glossary Glossary


Wide Spread Pain and Neuropathy
Mar 15, 2010

Dear Dr. I am experiencing wide-spread pain (mostly neuropathy in my limbs and the base of my skull in the back of my head). It feels as though I was just hit in the back of the head with a baseball bat or something hard as it's numbing and painful. In addition, I suffered a major stroke in 2003 and it was caused by a brain aneurism that was diagnosed as CNS Vasculitis. At that time, I was not on HIV medications but was immediately put on Sustiva/Combivir. I had serious adverse reactions to these medications and in 2005 was switched to Viramune and Truvada. I've been on these hard core medications since then and over the years, neuropathy, chronic head aches and back pain have becoming worse and worse. Although the Doctors tell me that the Viral load is undetectable and my CD4 is around 500, I am still getting wide-spread pain that seems to be spreading and now am unable to sleep because I'm waking up in the middle of the night in pain. Now I notice that my feet are cramping really bad and hurt as though I'm getting stepped on or some huge weight has been put onto my feet for a long period of time and wake up in pain from my feet, neuropathy (feels like millions of pins and needles poking at me) in my limbs (from the tips of my toes up to my thighs, and from the tips of my fingers up to my upper arms. The doctors have put me on pain medications called percocet; however, this medication does work but wears off in about 3 1/2-4 hours and then the same thing happens all over again. My primary care physician does not seem to understand anything about HIV or the long-term effects of the disease itself or the medications that I'm taking (every 12 hours) to keep my viral load down and my cd4 count up. My PCP has actually told me that he thinks that the pain is "all in my mind" and that "I'm imagining it". I'm so concerned at this point as I don't feel that I'm getting the proper treatment nor do I feel that my PCP has any empathy or understanding for how serious the pain is and that it's spreading! I desperately need help and don't know what to do. Please help in any way that you can as I live in Charlotte, NC and am on SSDI/Medicare with limited resources for special medical attention. What do I do? Please help. Thank you, BPS

Response from Dr. Frascino

Hello BPS,

It's unfortunate that you are not communicating well or able to work cooperatively with your PCP. Is there any option to switch to someone with whom you could work more closely? You should be under the care of an HIV specialist physician. He or she would be the best person to consult regarding your symptoms. For pain management, you should be seen by an HIV-knowledgeable neurologist, particularly in light of your past history of CNS vasculitis and stroke. Neurologists are adept at diagnosing and treating various pain syndromes.

I'll repost below some information from the archives regarding choosing an HIV specialist.

Good luck.

Dr. Bob

just tested positive (CHOOSING AN HIV SPECIALIST 2010) Jan 25, 2010

i know i got infected on jan 5th 2009,three weeks after that a had a throat infection.3-4 months after that i develop a lympnode in my neck,both side,arm pit,groin area.8- 9 months after that had a slight night sweat which goes on and off. till date after testing positive i have not done any test to see if i need medication. in how much danger am i putting myself

Response from Dr. Frascino

Hello,

Without more sophisticated testing (CD4 cell count, HIV plasma viral load, etc.), it's impossible for me to ascertain how much damage has been done to your immune system. Close clinical monitoring and routine laboratory assessments are strongly recommended for all HIVers. What are you waiting for? I urge you to establish care with an HIV specialist physician without further delay. Your health and well being are at stake. See below.

Dr. Bob

HIV Positive and pregnant (CHOOSING AN HIV SPECIALIST 2009) Nov 2, 2009

I tested positive in 2006 and haven't gone for any check up's to check my cd4 count and now I'm pregnant and still afraid to go for a check up. My husband is also positive and we still have sex without a condom, what are the chances that our baby will be infected, when do i start taking medication to prevent my baby from being infected and is it safe to take arv's when you are pregnant because i hear you sometimes get sick when you take them for the very first time?

Response from Dr. Frascino

Hello,

I find it terribly unfortunate and a bit sad that fear has prevented you from getting appropriate monitoring and treatment for your HIV disease. I hope you realize that by not getting the care you need, you are allowing the virus to replicate unchecked in your body and in turn slowly destroy your immune system. It is imperative that you establish care with an HIV specialist physician and HIV-knowledgeable obstetrician immediately. Certain antiretroviral medications can be taken during pregnancy and they significantly decrease the risk of mother-to-child HIV transmission. Without treatment, the chances your child will be HIV infected will be dramatically increased. Also, if you don't get appropriate care and treatment, the chances you'll be around to see your child grow up are slim to none. I can tell you if I had been too afraid to get treatment when I became HIV infected in January 1991, I wouldn't be here today to respond to your question.

I'll reprint some information below about finding an HIV specialist.

Good luck. Don't let fear keep you from getting the care you need!

Dr. Bob

Just found out... (CHOOSING AN HIV SPECIALIST) Sep 20, 2008

Well, doc, the feelings came and went and I got the nerve to test. It was positive... I don't know what to do now and I don't even know if I have long left cause of how bad I had the ARS and weight loss...

I want to live... I want to live a long happy life... I live in Texas, am I screwed? I'm a student in a grad school, so I'm poor, but what can I do? How do I move forward?

Response from Dr. Frascino

Hello,

Only those of us who have been through it really understand the full impact of hearing the words "your test came back positive." Many of us feel scared, wondering if we will soon get sick or die. We fear that we will be shunned, lose our jobs or maybe our housing; that we won't be able to have children; that we'll never be able to date, get married or have sex again. None of these things are, in reality, true.

The virus found me while I was working over 17 years ago! Back then, the prognosis for HIVers was about 10 years max. We've made remarkable, in fact miraculous, improvements in treatment of HIV/AIDS, which have dramatically decreased both morbidity (illness) and mortality (death) as demonstrated by the fact I'm still here answering your question rather than pushing up daisies. It is true we do not have a cure, but for many of those lucky enough to have access to antiretrovirals and expert (or at least competent) HIV medical care, "virally-enhanced," healthy and fulfilling lives are truly attainable. Here in the U.S., even for those who don't have or can't afford private health insurance (this includes undocumented immigrants, by the way), it is possible to get quality HIV care and support in most areas of the country.

Now that you know you are HIV positive, I would recommend two simple first steps:

1. Consult an HIV specialist. She will be able to assess the severity of your HIV disease and also help you access the health care system based on your health insurance or lack thereof. To locate an HIV specialist in your area, check the American Academy of HIV Medicine's Web site at www.aahivm.org. There you will find a roster of certified HIV specialists listed by locale. (I'll also print some information below from the archives that discusses choosing an HIV specialist.)

2. Get informed! Learn as much as you can about HIV and its treatments. This Web site is an excellent place to accomplish that. Begin by reviewing the information in the "Just Diagnosed" chapter that can be easily accessed on The Body's homepage under the Quick Links heading. Start with the articles found under the "Just Diagnosed Basics" subheading.

Finally, as far as living in Texas, well, yeah, that kinda sucks, but it really shouldn't impact negatively on your HIV disease.

Start learning more about HIV and get evaluated by an HIV specialist. I'm here if you need me. Let's get through this together, OK?

Dr. Bob

Need a Private doctor Aug 14, 2008

I am HIV Positive living in Seattle area. I currently don't have one and i am looking urgently in a private clinic? Do you know a good one? I asked this question earlier & was told about Peter Shalit who is fully booked until end of year. Please let me know if you have a good one in mind. Thank You.

Response from Dr. Frascino

Hi,

I would suggest you consult the American Academy of HIV Medicine Web site (www.aahivm.org). There you will find a list of certified HIV specialists arranged by locale. There are a number of well-qualified HIV specialists in the Seattle area. Be sure you hook up with one that you trust and with whom you can easily communicate. Your health insurance plan may have some restrictions, so remember to check this out as well. I'll repost some information below from the archives pertaining to locating an HIV specialist.

Good luck.

Dr. Bob

Choosing an HIV Care Provider

July 18, 2007

Why Is Choosing an HIV Care Provider Important?

Treating HIV disease is very complicated. There are choices to consider at every stage of the disease. It's best if you and your health care provider work together as a team. That makes it easier to choose and stick to your treatment plan. "Care provider" means a doctor, a physician's assistant, or a nurse practitioner.

There are several issues you may want to consider in choosing an HIV care provider. You might decide to have them be your "regular doctor" for all of your health issues. You might use a different care provider for most health issues and use your HIV provider as a specialist. If your regular provider isn't an HIV specialist, be sure they regularly get expert advice on HIV issues.

Training and Experience

Many people with HIV/AIDS get their care from physicians who are specialists in infectious diseases. However, especially now that people are living longer with HIV, it's important to deal with all of your health issues. You might prefer to have a family practitioner or a specialist in internal medicine as your primary physician.

No matter what their specialty, you will get better HIV care from providers who have experience treating people at all stages of HIV disease. Be sure to ask how many patients with HIV they have treated, and how many they currently see. HIV patients do better when their physicians have more experience treating HIV disease.

Do You Have Similar Ideas About Treating HIV?

Some providers are conservative. They prefer "tried and true" methods. Others are more aggressive. They are willing to try new and experimental treatments. Some are optimistic by nature, and focus on the hopeful or positive side when they talk about test results or future prospects. Others are more realistic. Some are pessimistic.

Some providers are comfortable suggesting "complementary and alternative" therapies such as massage, acupuncture, or herbs. Others stick strictly to Western medicine.

If you want a lot of emotional support, you probably won't be comfortable with a health care provider who only talks about test results. The more comfortable you are with their approach to HIV treatments, the easier it will be for you to get the kind of health care you want. Talk to providers and their patients before you make your choice.

The Provider-Patient Relationship

Many patients do better when they take an active role in planning their own health care. These patients do a lot of reading on their own, and bring information to their providers. They work together to make health care decisions.

Other patients are more comfortable with the provider making important decisions. Decide how you want to work with your provider. See if that fits with the way the provider likes to work with patients.

Help Your Provider Help You

Make sure that your provider has all the information needed to give the best advice about your treatment. This starts with your medical records, which may have to be transferred from another office. When you start working with a new provider, they will probably do a lot of tests to collect "baseline" information. This helps you see how well you're doing as time goes by.

Be sure your provider knows how you feel about using medications, and about your illness. Some people don't mind taking a lot of pills. Other people would rather take as few as possible. Are you willing to change your diet, or the amnount of exercise you do? Your provider should also know about other treatments you are using or want to try, including non-medical ones.

Be honest about your lifestyle. Your eating, sleeping, and work patterns can make a difference for your health care. So can your sexual practices and use of recreational drugs. If your provider seems too judgmental, try to change providers. It's better to have a provider who really knows you instead of holding back information.

Let your provider know about the important people in your life: the people who will support you if you get sick, or will help you make important medical decisions.

Availability

The best care provider won't do you any good if you can't get in to see them. Ask them (or their receptionist) how long it usually takes to get an appointment. Find out how well they usually stay on schedule during the day.

The type of insurance you have could limit your choice of a provider. Maybe the provider isn't on the list for your health maintenance organization (HMO) or insurance plan. Be sure to find out how you will be able to pay for their services.

Remember, you don't need an HIV specialist to help you with most of your health care needs. If a good HIV provider is hard to find, or if it's hard to get an appointment, use a non-HIV care provider for your general health care. Just be sure that when you are dealing with HIV issues, you see an experienced HIV provider, or one who consults with an expert in HIV.

Confidentiality

Some people are very concerned about keeping their HIV status private. You might choose to get your HIV care from a provider in another town to protect your privacy. You will need to find your own balance between confidentiality and convenience.

Changing Providers

Your health care needs might change as time goes by. Also, your ideas about treatment could change. Although you will probably get better medical care from a provider who has known you for a long time, you always have the right to stop seeing one provider and change to another.

To Find a Health Care Provider ...

You can get help finding a care provider from your case manager or from your local Department of Health. You can also ask other people living with HIV. The American Academy of HIV Medicine has a web page to help you find a doctor at http://aahivm.org/web/index.php?option= com_comprofiler&task=usersList.

The Bottom Line

HIV medical care is very complicated, and changes quickly. This makes it important to find an HIV care provider who works with HIV/AIDS patients and is committed to staying up to date. Your relationship with an HIV provider will be better if you are comfortable with each other's personal style and approach to dealing with health issues in general, and HIV in particular.



Previous
Confirmed Exposure
Next
Thank you

  
  • Email Email
  • Glossary Glossary

 Get Email Notifications When This Forum Updates or Subscribe With RSS


 
Advertisement



Q&A TERMS OF USE

This forum is designed for educational purposes only, and experts are not rendering medical, mental health, legal or other professional advice or services. If you have or suspect you may have a medical, mental health, legal or other problem that requires advice, consult your own caregiver, attorney or other qualified professional.

Experts appearing on this page are independent and are solely responsible for editing and fact-checking their material. Neither TheBody.com nor any advertiser is the publisher or speaker of posted visitors' questions or the experts' material.

Review our complete terms of use and copyright notice.

Powered by ExpertViewpoint

Advertisement