Medical Advice - HIV Meds

[writerdd]

Hi,

A friend just told me that she quit taking her HIV meds because, "the chemical onslaught is worse than the disease. Detoxing from the meds is dreadful, but it shouldn't last too long (I hope). I am now exploring immune strengthening (sp?) methods, healthier eating, etc... no quackery snake oils, just healthier living."

That sounds nice, especially the "no quackery snake oils" part, but I have never heard of anyone not getting full blown AIDS or extending their lifespan with HIV by eating healthier. Does anyone know anything about this or have any good, reliable sources of information that I could pass along?

Damn, it's bad enough having friends who are ill, but it's even worse worrying about them dying because of stupid medical advice.

[Terry]

http://www.sfaf.org/aids101/treatment.html might be a good place to start.

[Eos of the Eons]

I don't understand the notion that meds cause a "chemical onslaught". Isn't the friend already eating healthy? Or is it a diet of fries and coke that the friend is changing?

I guess just eating healthier and letting the virus take over those nice healthy T-cells is better than keeping the virus in check? I'm sure the viruses will appreciate that. The body won't though. It can only fight microbes off it actually has an immune system.

[blutoski]

Originally Posted by writerdd

A friend just told me that she quit taking her HIV meds because, "the chemical onslaught is worse than the disease. Detoxing from the meds is dreadful, but it shouldn't last too long (I hope). I am now exploring immune strengthening (sp?) methods, healthier eating, etc... no quackery snake oils, just healthier living."

This is my field of study. HIV. As usual: I preface this with caution against getting medical advice via internet community. What I can provide is information, rather than advice.

Basically, there is not enough information about her specific condition to know how serious this is. It is not common for subclinical HIV+ patients to be prescribed prophylactic antiretrovirals (except for acute wounds, such as needlesticks - been there). But if she is subclinical, then there probably isn't terrible risk. Her doctors may have been jumping the gun, but I doubt it.

OTOH, if she was prescribed the meds as a treatment, there is some risk that she could get AIDS and have a more serious problem than the side-effects of the meds. She has the right to make this choice, but it's important for her to make arrangements with her physician for scheduled testing in order to monitor progressk, and for her to establish a safety limit, beyond which she'll return to the meds. In other words: how will she know whether the immune-boosting strategies work? How will she know when they're failing?

The above is 'neutral' stuff she will probably agree with.



Now: about 'immune boosting'... All evidence that diet influences AIDS progress is anecdotal. Unfortunately, this statement doesn't cut any ice with true believers.

[writerdd]

Originally Posted by blutoski

This is my field of study. HIV. As usual: I preface this with caution against getting medical advice via internet community. What I can provide is information, rather than advice.

Basically, there is not enough information about her specific condition to know how serious this is.

I realize that no-one can give sound medical advice over the internet, but I just wanted some background info to know if this "healthy lifestyle instead of medication" is a popular thing that's going around or anything.

She has been on disability for the past 2 years and now wants or needs to go back to work. I assume that since she was on disability that she would not classify as subclinical HIV+. Also, as far as I can remember, she contracted the virus quite a few years ago, but I'm not 100% certain about the date.

I agree that it's her choice to decide what course of action to take. I'd just like to make sure that she is actually getting solid advice from her doctor, not rumors or anecdotes from some website or something.

[Eos of the Eons]

Originally Posted by writerdd

I'd just like to make sure that she is actually getting solid advice from her doctor, not rumors or anecdotes from some website or something.

Did you ask where she got the information from? An ND (which is not a real doctor), a chiro (which is not a real doctor), some website, some magazine, or some forum?

I'm certain she is not following any MD's advice.

[writerdd]

Originally Posted by Eos of the Eons

Did you ask where she got the information from? An ND (which is not a real doctor), a chiro (which is not a real doctor), some website, some magazine, or some forum?

I'm certain she is not following any MD's advice.

Yes, I asked her but I haven't heard back yet. Also, I want to add that I think doing some preliminary research on said websites, forums, etc., is perfectly OK, but one should not make final decisions without consulting with a reputable proffessional MD, preferably a specialist.

What is an ND? I haven't even heard of that one?

[blutoski]

Originally Posted by writerdd

What is an ND? I haven't even heard of that one?

Doctor of Naturopathy.

[Deetee]

This is my specialist field too, but as others have said I would encourage your friend to talk through the problems with her specialist.

Originally Posted by writerdd

A friend just told me that she quit taking her HIV meds because, "the chemical onslaught is worse than the disease. Detoxing from the meds is dreadful, but it shouldn't last too long (I hope).

The meds can be quite complex and hard to tolerate. Metabolic side effects are quite a concern (see here and here) but overall if one requires drug therapy, I would say that the best prognosis is in those who can continue the meds and do not have to stop.

Originally Posted by writerdd

I am now exploring immune strengthening (sp?) methods, healthier eating, etc... no quackery snake oils, just healthier living."

In itself this is not bad advice - certainly it will help to some extent. But if your friend has significant immunodefficiency, then supplements that supposedly boost immunity and other attempts to help the immune system are certainly bound to fail in the face of the ultimately relentless march of the virus.
There was a view until recently that breaks from treatment could help people by sparing them the side effects of continuous HIV therapy, with patients restarting the drugs when their blood counts indicated they needed to restart meds. Alas, this has been shown to be a false hope, and patients fare much less well than if they remain on meds continuously (they were twice as likely to get ill).

There may be drug regimens that are "kinder" than the one your friend has been on, with fewer side effects but which are still adequate to suppress virus replication. She should talk to her MD.

[writerdd]

Originally Posted by Deetee

There may be drug regimens that are "kinder" than the one your friend has been on, with fewer side effects but which are still adequate to suppress virus replication. She should talk to her MD.

Well, it sounds like she's given up to me. This morning she told me, "filling my body with chemicals that produce side effects that need more chemicals that produce side effects that need even more chemicals, is just not working for me anymore, I tried the doctors ways, now its between me and Gd, and a healthier way."

I guess if she's just trying to feel better for whatever time she has left, I can understand that and respect that decision. But I think she's making a terrible decision if her goal is to extend her life. I can't imagine having to make such a decision myself. I have often thought about what I would do if I had cancer. Would I do chemo, even if there was only a slim chance of a cure? And with AIDS, there's no chance of a cure, so the decision is even more difficult. (BTW, she does have AIDS, so it's not just a question of being HIV+.)

I really don't feel qualified -- either medically or emotionally -- to give her any advice in this situation, but at the same time I feel terrible that she might be giving up on the only chance to keep things in check for any length of time.

[Deetee]

Originally Posted by writerdd

Well, it sounds like she's given up to me. This morning she told me, "filling my body with chemicals that produce side effects that need more chemicals that produce side effects that need even more chemicals, is just not working for me anymore, I tried the doctors ways, now its between me and Gd, and a healthier way."

I really don't feel qualified -- either medically or emotionally -- to give her any advice in this situation, but at the same time I feel terrible that she might be giving up on the only chance to keep things in check for any length of time.

I'm sorry that she feels in the position. I know people who have been there, and made the choices they feel suit them best. She needs to know that it is her decision - its her body and she is in control. That's fine - but whatever choice she makes must be an informed one. often it isn't a question of either/or - it is often possible to carry on taking some conventional meds when it becomes absolutely necessary. It may be that she feels so bad from the side effects that a break from treatment will make her feel better - but this honeymoon period is likely to be short-lived.

Try to fully support her and encourage her as much as possible, but also make sure she has information about the other options, and the possible consequenses of her actions. Have you tried to look for HIV/AIDS support groups in her area? Talking through her situation with others who have been there will help.

HIV is a funny disease - the final mode of death and its timing can be quite unpredictable. It differs in this respect from say cancer, where people sometimes reject the option of toxic chemo in order to enjoy their last few months of life, knowing roughly when and how the end will come. Is she religious? Does she feel she is placing matters in god's hands and that he will somehow help her survive, or help her have an uncomplicated end to her life? I'm afraid god is a capricious little bastard at the best of times, particularly so with HIV, and I wouldn't count on his medical help.

Finally, even though she has AIDS, this does not necesarily mean she will necessarily get ill or die soon. Without meds, the average survival from AIDS diagnosis is around 2 years. With meds, I have seen people alive and well up to 20 years later. If your friend has suffered complicated side effects, tried most of the meds on offer and has failed to respond to them adequately, then there may be a case for stopping. But if she has a reasonably high CD4 count, and she has some untried drug options left, then she should consider her decision very carefully.

By way of anecdote, one patient I know had tried everything, even though he developed intolerable side effects to some meds and had to stop them. He had multiresistant HIV, and even the meds he tolerated did not work well. But he hung in there, and when new therapies came along for resistant HIV, he took them and has done brilliantly. The new meds mean he has to inject himself rather like a diabetic, but he is enjoying a new lease of life he thought he would never get back. If he had thrown in the towel and trusted to god a 2 or 3 years ago, he would be dead.

[Eos of the Eons]

Very sad situation. I've appreciated Deetees words on this, and writerdd's confusion. All one can do is lend the poor girl some support at this point.