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"Ask the Social Worker" (who has worked with HIV/AIDS patients for 20 yrs)

Discussion in 'XMRV Testing, Treatment and Transmission' started by Rrrr, Apr 11, 2010.

  1. Rrrr

    Rrrr Senior Member

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    "Ask the Social Worker"
    (who has worked with HIV/AIDS patients for 20 yrs)

    Hi all,

    One of my best friends is a social worker who has been working with HIV/AIDS patients for 20 yrs. She leads support groups for women with HIV/AIDS. She has been there for much of the last two decades of the evolution of antiretroviral treatments. She is not a doctor, so will not be able to answer detailed meds questions, but has agreed to TRY to answer general questions you may have.

    Post your questions here and I'll ask her via phone and type up her responses and post them on this thread.

    I am not sure if this is a needed thing, but I guess I'll find out by seeing if anyone asks any questions.

    One thing she said is this: Once someone with HIV/AIDS gets on the retroviral meds it takes about 2-4 weeks to take effect and then the improvement is dramatic. And she said that, as we all know already, HIV/AIDS folks do not just take one antiretroviral med because then the body will become resistant to that. So the combo/cocktail route is the way to go.

    Best,
    Rrrr
  2. vdt33

    vdt33

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    Rrrr, here's my question:

    Dear Social Worker,

    In the beginning when AIDS folks whose illness was pretty advanced began to take retrovirals, did they recover most of their pre-AIDS health? Or have HIV drugs mostly helped those who are HIV positive from advancing to AIDS?

    vdt
  3. Rrrr

    Rrrr Senior Member

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    vdt33, great question!!!! why didn't i think of that one? i'll accumulate a few questions from folks here before i present her with all of them. keep 'um coming! -- rrrr
  4. bullybeef

    bullybeef Senior Member

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    If I could ask a question: To what level of activity does someone with HIV/AIDS recover to whilst on medication. And can the medication itself cause adverse effects which can be as debilitating as your original symptoms.

    My aim is to see myself in a physically fit position to return to fulltime employment. I am desperate to start earning again. But I do worry that any antivirals are simply there to keep you alive, rather than give you your life back.

    Oh, and just one more question based upon the above: Do HIV/AIDS sufferers still receive a stigma or discrimination when looking for work?
  5. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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    Has anyone in her AIDS circle ever heard of or tried Ampligen?

    Are all HIV/AIDS patients on disability? If not, what percentage are and what are typical symptoms that put them on disability?

    How many die from kidney and liver failure from HAART?
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Although there is no study specifically proving that HIV causes AIDS, it is generally accepted. How did this consensus develop? Did a governmental agency make some announcement? Did studies gradually collect, tipping the scale of doctor opinions? Did a drug company start marketing the drugs, leading to doctors to use them? Was the conclusion a gradual process or was it from one big announcement?

    Tina
  7. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    How are today's patients able to afford medications and labs? How many are not receiving treatment or are getting inadequate treatment due to finances? Thanks, S
  8. Hope123

    Hope123 Senior Member

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    Since I have some experience with HIV, I'm going to jump in and answer a few questions.

    1. I know a few people with HIV personally on antiretrovirals. They are doing very well. One runs his own small business and travels a lot; another works full-time as director of a department. They both lead active lives. My sense is for many folks, antiretrovirals do not just let people NOT die, it help them to live near-normal lives. Side effects do occur and have to be dealt with on an individual to individual basis but Nancy Klimas was correct in her statement that many HIV+ folks are much less disabled than people with CFS.

    Check out this magazine for HIV+ people: http://www.poz.com/

    2. Re: Tina's question. I think there have a been a few threads here about how to proved causality in disease. HIV's link to this illness was established over many, many studies of different types over time - both laboratory and field-based (talking/ examining people with the illness). This is true of many areas in medicine, even ones which appear to be established by one landmark study. Newton said something about how his discoveries included "standing on the shoulder of giants" meaning he built upon work of prior scientists.

    3. Funding for HIV testing and meds comes from many sources. One source is the Ryan White Care Act.

    http://en.wikipedia.org/wiki/Ryan_White_Care_Act
  9. Rrrr

    Rrrr Senior Member

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    Thanks, Hope, for jumping in with some answers. Meanwhile, I'm going to ask my social worker friend to answer the above posted questions. And let's stop there, as I don't want to overwhelm her on her first round (I'd like to see if she is up for a 2nd round of questions, but let's just do the first round and see!).

    I'll post my friend's answers on this thread.

    Warmly,
    Rrrr
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Hope, thank you. I admit I was lazy and might could have found this out myself with some effort. But I wanted to spend that precious asset elsewhere. So like other illnesses, it was messy. I assume your comments were about AIDS and not just in general.

    We have a hospital here in Birmingham that is in the forefront of HIV vaccine study. It is UAB.

    But nothing on CFS.
    Tina
  11. Rrrr

    Rrrr Senior Member

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    Sorry for the delay, folks. It took some time to schedule a phone date to go over these questions with my friend, the HIV/AIDS social worker. So my friend, the Social Worker, spent some time answering all yr questions today, and I typed them up. If there are any mistakes, it is likely my fault, not hers.

    First, the Social Worker said, "These questions are great, and they are complex -- and there is no 1 answer to these questions. But here is my take on it..."
  12. Rrrr

    Rrrr Senior Member

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    Social Worker says:

    The answer to your first question is "no." If someone with HIV has progressed to AIDS, the body will maintain, but never go back to its original healthy state. If someone at 300 T cell level (a bad level) starts taking the antiretroviral meds they will not recover as much as the person at the 500 T cell level (a better level) who starts taking the meds. The latest study shows that the longer you wait to take the meds, the more debilitated yr body is, and therefore the more difficult it is to go back to your pre-illness level.

    The answer to yr next question is, in general, yes. The take away here is this: Starting to take medications will help anybody no matter what stage of the illness you are in.
  13. Rrrr

    Rrrr Senior Member

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    Social Worker says:

    Q. To what level of activity does someone with HIV/AIDS recover to whilst on medication. And can the medication itself cause adverse effects which can be as debilitating as your original symptoms.

    A. Because of the advances in the medication treatments, side effects of medications can be reduced to minimal or none, even with AZT. It is all about finding out which combination of meds will work for you, because no two bodies are the same. What works for A will not work for B. With that said, you may experience some side effects, the most common being nausea, diarrhea, achy body, and tiredness. However, they go away usually by the end of the 2nd week. The body just needs time to adjust. The effects are minimal compared to what they were 10-15 years ago, as the doses are lower now. Today many people are returning to work or school full time or part time, and they are parenting -- and before they began taking antiretrovirals they were almost as sick as my friend Rrrr (who has CFS), who is bedridden and housebound a lot of the time.

    Q. Do HIV/AIDS sufferers still receive a stigma or discrimination when looking for work?

    A. Yes, to a lesser extent than in the past, but they do. But they do not have to disclose their HIV/AIDs status at work.
  14. Rrrr

    Rrrr Senior Member

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    Social Worker says:

    Q. Has anyone in her AIDS circle ever heard of or tried Ampligen?
    A. She did not know this drug. It sounds familiar to her, but she does not know why.

    Q. Are all HIV/AIDS patients on disability? If not, what percentage are and what are typical symptoms that put them on disability?
    A. No, not all HIV/AIDS patients are on disability. Mostly just people who have reached AIDS stage, so they likely have opportunistic infection, like Pneumocystis pneumonia (PCP). They get on disability usually if they have an opportunistic infection, when their body has become so susceptible that they are vulnerable to getting any infection. Reminder: When people get on antiretroviral meds, they do get better and can function in daily life. Social Worker says that by and large, people with CFS are much sicker than the people she knows with HIV/AIDS.

    Q. How many die from kidney and liver failure from HAART?
    Not a lot. She does not know the percentage.
  15. Rrrr

    Rrrr Senior Member

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    Social Worker says:

    She does not know the answer to this. It was likely a combo of the doctors watching what was happening with the patients and the research being done. AIDS is not like CFS: with AIDS, people were dying at a devastating rate. The numbers were forcing the gov't to act. And also a lot of scientists were being listened to because people were dying. Because people were dying so fast, the gov't had to allow the rules to be bent or broken to allow studies to be more done rapidly. People were saying, "I'll take this med even tho it was not fully studied." Another factor here: Openly gay white men with HIV were getting help from closeted gay white men who were in positions of power in the gov't and out of the gov't.
  16. Rrrr

    Rrrr Senior Member

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    Social Worker says:

    Q. How are today's patients able to afford medications and labs?

    A. If a person is employed, there is insurance. If the person is not employed, and they have HIV/AIDS there is medicare/Medicaid. In the U.S. most folks with HIV/AIDS get medical treatment and labs no matter their financial status. There are always free clinics that will provide the service. What has happened in the US, for the most part, is that in each city or state there is a known clinic or center that is known for offering free (if needed) treatment and labs for AIDS.

    Separately, for the meds, most states have ADAP (AIDS Drug Assistance Program), and they offer free meds to those who can't afford the meds on their own. Each state is different as to how much money they have allocated for this program, in addition to what the federal gov't has allocated to the program.

    Q. How many are not receiving treatment or are getting inadequate treatment due to finances?

    A. That depends on what part of the country you live in. If you live in a city you will get treatment. But if you live in a rural community that does not care about how many people are dying, and are biased about the illness, then you may not get treatment because they have not put much money towards AIDS. (This illness is still primarily considered a gay disease and there is more homophobia in rural communities.)
  17. jackie

    jackie Senior Member

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    Thank you rrrr! This was a very kind gesture on your part (thinking of this)...and The Social Worker for taking the time to answer so completely! Will it be ok if we post additional questions from time to time? (I know we'd all be glad to wait patiently for answers!)

    (I'm waiting for my T-cell count (as well as NK cells)...I'm very curious as I have chronic VZV (shingles) and am wondering if the t-cell will be normal, high or low (indicating immunocompromised? or not? I'll have some questions possibly when my results come back)...thank The Social Worker for us!....j
  18. gracenote

    gracenote All shall be well . . .

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    Thank you Rrrr and thank the social worker. This was great.
  19. Rrrr

    Rrrr Senior Member

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    I hope my friend the social worker is willing to do another round of questions. I think she will, but I did not ask her yet. So if folks here feel it might be helpful, let's get another 5 or so questions, if there are any, and hope she will be up for the task!

    It is sobering to hear from her the same thing we have heard from Dr. Klimas: that folks with CFS are sicker than folks with HIV/AIDS.

    Warmly,
    Rrrr
  20. Abraxas

    Abraxas Senior Member

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    Many thanks to Rrrr and social worker, very interesting.

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