She hopes it works...AIDS and Africa

[kittynh]

I was coming here to post about my friend with AIDS. Well I counted and I know 12 people with AIDS as friends (not from tv and such). My friend with AIDS was sadly optimistic about this whole thing. She said, "I don't want to believe it, but I won't discount it because what if it WORKS?" I asked what if Gambia started offering trips for treatment, you fly in and stay at a hospital and pay for this special treatment. Rather like the lucrative Mexican clinics (which pull in a lot of money for Mexico and because of such are allowed to operate). Seems to me that this would be a smart move for a poor nation. Not a very nice move, but pulling in the medical tourists (yeah, there are a LOT of nations that do so, and don't forget Lourdes...) would really help the economy. The Phillipines still have psychic surgeons.

Well, my friend said she would go. She hates taking her daily dose of drugs. The standard treatment now is pretty harsh, and for her, a chance at a cure is worth any amount of money. She got really angry at me that I could just dismiss this whole thing without waiting for the results...whatever they would be. She then said, "it started in Africa, so it makes sense that African herbs could cure it!" She isn't stupid, she's just desperate.

And because you so want it to be true, you will invest a lot of energy in hanging onto that hope.

I see this as an medical tourist hot spot to be. There is a lot of anger in Africa about AIDS. There is widespread belief that it was introduced by whites, or Western cultures. The CIA is blamed a lot. And the lack of an AIDS vaccine is seen as something that the West is also to be blamed for. They see the emphasis on treatment, or a cure, and not a vaccine, as how selfish the West is. I recently read an article about how if the money spent on treatment had been spent on a vaccine, there would be one. Totally silly article, but reflective of the anger in Africa over this issue.

Would I like there to be a cure. YES! No one would be happier than I am if a few herbs could cure AIDS. Sadly, I see suppression by the big medical groups as being to blame for this cure not being used. Heck, I have a neighbor that is a drug rep for a company and he is driving a new Porsche and has horses and his own private plane. It does pay well. His take on African AIDS? "they should keep their loincloth on!" Nice guy! Yeah, I'd like the herbal cure to work! But it won't. Because if it did, this isn't the way they'd go about touting it.

[BillyJoe]

I am really starting to think that there has to be a zero tolerance for this sort of thing. It is easy to go along with a friend who wants to try an alternative, but I don't think it's the right thing to do.

If you know this stuff is BS you should tell your friend in a firm, no nonsense, but compassionate way. You should help your friend in every way you can but firmly and empathetically decline to help with respect to BS such as this. You must make it absolutely clear to them that this is BS. Any less and you will end up doing them a disservice in the long run.

[Skeptic Ginger]

Hope is a tricky issue for patients sometimes. In this case it's really not that hard. There is real hope in real research. Your friend maybe could use a little pep talk about the incredible advances in genetic science that have sped up viral research exponentially.

She does not need hope there will be a miracle cure of a few vitamins from the witch doctor. That's what this guy is, president or not.

But I understand the dilemma. When you see someone with a new spinal cord injury and it's past the point they will recover any more function and they are still clinging to the hope the diagnosis is wrong, should you fight that? I say no as long as it isn't stopping them from rehab they need to retrain what they have left to use. People in that kind of case are not being harmed by the hope. They will resolve the grief on their own time.

If your friend's magical thinking gets too strong she could waste time and money actually going to Africa and that would be a shame.

[BillyJoe]

Hope is a tricky issue for patients sometimes. In this case it's really not that hard. There is real hope in real research. Your friend maybe could use a little pep talk about the incredible advances in genetic science that have sped up viral research exponentially.

What if she wants to put her eggs in two baskets?
What if she is close to the end with no research applications yet in sight?

She does not need hope there will be a miracle cure

She might need a miracle cure is she is near the end. The problem is how to persuade her that a miracle cure is not available. (edit: oops, I think that is what you mean)

When you see someone with a new spinal cord injury and it's past the point they will recover any more function and they are still clinging to the hope the diagnosis is wrong, should you fight that? I say no as long as it isn't stopping them from rehab they need to retrain what they have left to use. People in that kind of case are not being harmed by the hope. They will resolve the grief on their own time.

This would seem the best course of action in this situation.

If your friend's magical thinking gets too strong she could waste time and money actually going to Africa and that would be a shame.

Wasting money is not likely to be an issue for her when she is facing death, but time is the essence. But, yes, it would be a tragedy if she wasted it chasing an illusion.

[rjh01]

I knew I have heard of this debate before. What's the Harm? (http://www.sciam.com/article.cfm?chanID=sa006&articleID=0006CEF5-07B8-1FA8-807883414B7F0000&colID=13)
What one skeptic did when his mother was dying
Given the choice of spending the next couple months schlepping my mother around the country on a wild goose chase versus spending the time together, my dad and I decided on the latter. She died a few months later, on September 2, 2000, three years ago to the day I penned this column.

[Skeptic Ginger]

Billy Joe, if there was anything of substance in this idiot's claims, that would be one thing. But it is unquestionably bogus. It isn't like the guy has a single lab test verifying anything. He doesn't. Do you think just because someone makes a snake oil potion and claims it cures AIDS people should try it?

And wasting money matters. Especially with HIV because people are living decades with antiretroviral drugs and careful management of opportunistic infections.

[BillyJoe]

Billy Joe, if there was anything of substance in this idiot's claims, that would be one thing. But it is unquestionably bogus. It isn't like the guy has a single lab test verifying anything. He doesn't. Do you think just because someone makes a snake oil potion and claims it cures AIDS people should try it?:confused:

Ah....I see how you misread my post. :)

I should have phrased it better. I meant: what would you say to her if she said she wanted to try both conventional medicine AND this (obviously quack) "cure".
And what if she was close to death. You couldn't tell her a medical cure is around the corner, so what would you tell her to prevent her from embarking on her wild goose chase.

I hate it when people say to "try it" when there is no evidence for it, and just because there is also no evidence of ill-effect.

And wasting money matters. Especially with HIV because people are living decades with antiretroviral drugs and careful management of opportunistic infections.But someone close to death doesn't care how much money they spend. How would you persuade them not to go?

[Jon.]

And because you so want it to be true, you will invest a lot of energy in hanging onto that hope.

Anyone who believes in "The Secret" and the "power of attraction" would do well to think hard on this statement.

[kittynh]

well she isn't near death. She has had AIDS for about 7 years now I think. She is tired of her medication schedule. She's tired of having to change it around all the time, and having hives and various other problems because of her medications.

She thought, well these drugs will keep me alive until they find a cure.

I actually went on the internet and printed out tons of paper from sites showing various trials and the latest research and such. I highlighted the good stuff for her... so she could SEE what was coming up "soon". Though sadly I"m not sure how soon it will really be.

She goes to a local AIDS support group. Now, this is in Vermont, so she said they are all talking about AFRICA! I said "you should be talking about what is in these papers!"

Oh and does she have the money to go to Africa, no. But is she thinking about ways to raise the money (as in having all her friends do a "walk" or donate) YES! She says, "I won't go unless there is a good hospital set up and it's been proven" By proven she is very vague. She doesn't have a clue what "Proven" means, at least from a scientific standpoint.

I think that is what JREF and skeptical thinking can do. What is "proven"?

She isn't dying, she is just tired of waiting and feeling bad. She isnt' dating, she has a hard time just working and then going home to take care of herself, half her family is fundie and won't talk to her, life she feels is in limbo until there is a "cure".

Guess who isn't going to donate if she finds "proof"?

[BillyJoe]

kitty,

Keep at it.
Have you been able to find any critical stuff about the "cure" which you could offer her?
Would she come online to discus it?

I would hate it if she ends up going on that wild goose chase.

[BillyJoe]

Guess who isn't going to donate if she finds "proof"?What an excellent idea.
Good on you for that bit of lateral thinking. :)

[Overman]

Is it full blown AIDS or HIV...?

Didn't Magic Johnson get cured of HIV?

[BillyJoe]

Is it full blown AIDS or HIV...?Hmmm, yes, good question. Kitty said she has AIDS but her description sounds more like it's asymptomatic infection with HIV.

Didn't Magic Johnson get cured of HIV?
I think there have been rare (?comfirmed) cases of people developing their own immunity to HIV...

http://www.medicalnewstoday.com/healthnews.php?newsid=33558

Andrew Stimpson, 25, tested positive for AIDS in 2002, now he tests negative, says a spokesperson for the Chelsea and Westminster Healthcare Trust, London, UK. [They] were adamant that the two tests were correct and that there was no identity mix up - they carried DNA checks to make sure it was Andrew.



...but Magic Johnson is not one of them. He was diagnosed in 1991 and conmtinues to take anti-retroviral medication to this day and remains infected but healthy.

http://www.usatoday.com/news/nation/2006-11-30-magic-aids_x.htm


Johnson says he's anything but cured. He says he owes his well-being — and quite possibly his life — to the multidrug cocktail he takes everyday.

[Skeptic Ginger]

Is it full blown AIDS or HIV...?

Didn't Magic Johnson get cured of HIV?Tell me you know better than that!

Don't you think it would have been headlines for days?

And BillyJoe, you really should be clear about what you are saying before repeating myths.

"I think there have been rare (?comfirmed) cases of people developing their own immunity to HIV..."

First, he tested positive to antibodies to HIV and later negative. He was HIV free later. That isn't the same as having an established infection that then resolved. I'll see if I can find more recent update. This is the only known case and antibody tests can have false positives.

[Skeptic Ginger]

This just isn't a case which provides any kind of reliable data. Most of these are blog entries but they appear to be from people who were relaying credible information about the case. I'll leave it to anyone who has better sources to post them.

It is certainly one possibility that out of 34.9 million cases, (http://independentsources.com/2005/11/14/man-cures-himself-of-aids-not-likely/) Mr. Stimpson was cured. Another far more likely posssibility is that the original test was a false positive. Unfortunately, none of the articles published so far have made mention of the possibility of a false positive and are instead running with the attention grabbing story of the “miracle cure.”

Over the past 2 years Mr. Stimpson has repeatedly declined requests for additional tests and an unfortunate side-effect of his “miracle” is the false hope may give or the Aids-curing hypotheses that will inevitably result from this sample size of one:...

...Another point about Mr. Stimpson: upon learning of his “miracle” he attempted to sue the testing lab before being told he had no case. He appears to have recently sold his story for an undisclosed monetary payment. What good is a miracle if you can’t cash in on it somehow?

...Update: Since selling his story, Mr. Stimpson’s handlers have modified his “no testing on me” position to “I’ll do whatever I can to help find a cure.” (Yeah, right).

Let’s hope that HIV “denialists” do not somehow cite this as “evidence” that HIV does not cause aids. (There is enough bad science in the original story without them getting involved.)


Miracle HIV patient didn't have virus (http://www.upi.com/ConsumerHealthDaily/view.php?StoryID=20051116-015251-1581r)LONDON, Nov. 16 (UPI) -- The British clinic that initially told a man his body had rid itself of HIV now says the man did not have the virus in the first place.

"It is probably there was never any evidence of him having the HIV virus," the Chelsea and Westminster NHS Trust admitted. "We don't know exactly what happened.

The clinic initially told Andrew Stimpson, 25, of London, he had contracted the virus that causes AIDS and later told him that by some miracle, his body had rid itself of the disease.

Stimpson said Wednesday he had lost "all confidence" in the clinic, the Mirror reported.


Edwin J. Bernard, Tuesday, November 15, 2005 (http://www.aidsmap.com/en/news/495234A8-2491-4A8B-8F91-39B32DA321DF.asp)Reports that a UK man has "cured" himself of HIV appear to be premature. Andrew Stimpson, 25, gave interviews to two UK Sunday newspapers, both of which included excerpts of a letter from the NHS Litigation Authority that claim Mr Stimpson had both an undetectable viral load and tested negative for HIV antibodies in 2003 and 2004. However, in 2002, the reports say, he had tested HIV antibody positive and had very low levels of detectable HIV. Although the NHS Litigation Authority letter says that all tests were definitely on Mr Stimpson's blood, and that the results were "exceptional and medically remarkable", they also requested Mr Stimpson to undertake further testing. However, the Chelsea and Westminster health trust told several newspapers yesterday that so far Mr Stimpson had "declined" the request.

Two versions of Mr Stimpson's story appeared on Sunday in the two best-selling UK newspapers, the News of the World, and the Mail on Sunday. It appears he had signed contracts with both.

Mr Stimpson, from Scotland, who lives in London with his HIV-positive boyfriend, told the News of the World in a story headlined I'm the first in the world to be cured of HIV that he believes he may have cured himself by taking vitamin supplements. He also says that once he had been told that he was HIV-positive he became depressed and gave up practising protected intercourse with his partner. Once he was told that he was no longer HIV-positive, he began litigation against the Chelsea and Westminster NHS Trust believing they had got his blood mixed-up. However, a letter confirming this was definitely not the case was reportedly received by Mr Stimpson last month.

...In October 2003, during a routine check-up, the Mail on Sunday report suggests that he had three confirmed undetectable viral load tests. The term 'undetectable' means that there is limit below which it is not possible to measure the amount of HIV present, usually 50 copies/ml, and indicates that a specific viral load test cannot find any HIV in a given blood sample. An undetectable result does not usually mean that the blood is free of HIV. In fact, most people with 'undetectable' viral load have HIV in their blood, as well as in blood cells, tissue and bodily fluids.

However, what is unusual is that Mr Stimpson appears to also have seroreverted from HIV-positive to HIV-negative. Another part of the letter from the NHS Litigation Authority says that in March 2004, he was "still HIV-antibody negative."

Earlier this year, aidsmap reported that seroreversion is possible, but rare, after early treatment of acute HIV infection, and there have also been previous anecdotal reports, none of which have stood up to further scrutiny, of this happening in untreated individuals.

Comment
It is too early to speculate whether Mr Stimpson's case is indicative of a 'cure', spontaneous, or otherwise.

Whatever the truth is with this guy, it isn't relevant. In 30 years, since the first HIV case was diagnosed, it appears to be for all intents and purposes still incurable. There are a small number of non-progressers who were HIV positive but did not progress to AIDS for 10-15 years. The usual time frame for AIDS onset after infection before anti-retrovirals was 5 years. With about 80% of infected newborns and some of those who got massive viral doses initially such as through a blood transfusion before tests were available, progression to AIDS was less than a year up to 2 years.

Without treatment, death after onset of AIDS averages 2 years.

But now with viral suppression treatment, and skilled management of infections, people remain alive until drug resistance develops and all the alternate anti-virals have been used up. Research shows patients do better when their disease is managed by HIV specialists rather than GPs. It is a very complicated treatment regimen.

Patients get very tired of sticking to it. That sounds like what is happening here. Kitty, I suggest you go to some of the HIV community web sites and see what they suggest friends and family do to help a person who is becoming fatigued and depressed from the medicine regimen.

What providers try to do is find which drugs the patient might forgo temporarily. Drug holidays have been tried but sadly lead quickly to drug resistance. The virus returns to large scale reproduction in only a few days off meds and when you try to resume treatment, there is a good chance some of those reproduced virus particles will have resistant mutations.


This was in Yahoo news today:

AIDS patients in Zambia lured by fake cures (http://news.yahoo.com/s/afp/20070319/hl_afp/zambiahealthaids_070319142905)
Mon Mar 19, 11:21 AM ET

LUSAKA (AFP) -
AIDS patients in Zambia are abandoning their life-prolonging drugs in exchange for bogus cures that have hit the market in recent weeks, a leading AIDS advocacy group said Monday....

...The Network of Zambian People Living with
HIV/AIDS (NZP+) said it has received reports that some of its members were stopping the use of antiretroviral drugs (ARVs) for fake cures being promoted in the media....

...One of Zambia's weekly newspapers published a story indicating that a drug that cures AIDS had been discovered in the United States, and saying the newspaper's editor was the authorised dealer of the 'cure' in Zambia.

Another traditional herbalist appeared on a live radio programme claiming that she had found the cure for AIDS and all her patients abandoned their ARVs after taking her medicines.

"Zambia has already seen numerous examples of claims to cure HIV, all of which have proven to be untrue, confusing, and regrettably lethal, since they draw HIV positive people away from proper ways of dealing with their status," Banda said.

[kittynh]

Wow! Thanks for that information to share!

I have a friend that has lung cancer. She is on year 4 of her chemo treatments. She can never, ever stop taking chemotherapy treatments. When one stops working, she switches to another. She was part of a new test program where old drugs that had stopped working are tried again, and happily this program has worked well. So when she uses up a chemo treatment, she can switch back to an old one that worked well. Talk about having strenght! She works full time, is a mom, and so seriously in debt to the hospital it isn't even funny (thank goodness for her getting into the trial group at the hospital). But when I ask her how she is doing she says, "I"m going strong. I can keep this up as long as I have to, every day is another victory for me."


My friend with lung cancer has been putting all her faith and time into science! Searching the internet, looking at new drug trials and emailing with her treatment team. She works as an equal part of a team that sets up her treatment. She really feels like she has a voice in her health.

My friend with AIDS just feels like doctors said, "do this, and no cure and you will be miserable". I see that as a difference here. One friend is involved and has faith in her doctors. The other, the drugs are as alien to her as magic herbs from AFrica.

[BillyJoe]

I think there have been rare (?comfirmed) cases of people developing their own immunity to HIV. And BillyJoe, you really should be clear about what you are saying before repeating myths.That was a bit harsh.

First, he tested positive to antibodies to HIV and later negative. He was HIV free later. That isn't the same as having an established infection that then resolved. I'll see if I can find more recent update. This is the only known case and antibody tests can have false positives.It's more a case of posting in a hurry before work. I left the link up to peruse later - but you beat me to it.

edit: But wait....if he tested positive to antibodies to HIV (and if it wasn't a false positive), and if he later tested negative (and if it wasn't a false negative), then that IS the same as having an established infection that then resolved. Isn't it? Or do you mean something special about "established"?

[Skeptic Ginger]

That was a bit harsh.

It's more a case of posting in a hurry before work. I left the link up to peruse later - but you beat me to it.

edit: But wait....if he tested positive to antibodies to HIV (and if it wasn't a false positive), and if he later tested negative (and if it wasn't a false negative), then that IS the same as having an established infection that then resolved. Isn't it? Or do you mean something special about "established"?It wasn't meant to be harsh. In my line of work, I often admonish health care workers not to perpetuate bad medicine. So I operate in that mode.

From the reports, after I read a number of them, this guy's case was so muddled that we'll never know what the real story is. It's like the evidence is contaminated.

There is a genetic mutation called the CCR5 deletion which if you inherit 2 copies, the HIV virus has a harder time infecting cells. But even they are not 100% protected. It just takes a bigger initial dose of virus to cause infection.

But such a person would not develop antibodies. One of the problems with this case is antibodies are not protective. So there is no clear reason this guy would be protected rather than infected if he does have antibodies. And, he was suing claiming he had unprotected sex with his infected partner after believing he was infected. He has not come forward to allow further testing. For all we know, the negative test was the false test and the guy has HIV.

Just because one detects antibodies doesn't rule out false positives and failing to detect virus doesn't rule out false negatives. So given the reports, you really can't say much about this guy's case except that no additional cases have been found so it isn't very relevant to other people with HIV.

[BillyJoe]

It wasn't meant to be harsh. In my line of work, I often admonish health care workers not to perpetuate bad medicine. So I operate in that mode.Yeah, but is was a doubly qualified sentence ("I think" and "?confirmed") as well as a link to explore the issue further. On top of this I supplied a factual correction about Magic Johnson.

But nevermind, I will survive. :)

[Skeptic Ginger]

I posted, "Tell me you know better than that!" after you posted, "Didn't Magic Johnson get cured of HIV?"

Perhaps it was presumptuous of me to think most people realize he hasn't been cured.

My apologies if I was harsh. :) Glad you are going to pull through. :D

[BillyJoe]

I posted, "Tell me you know better than that!" after you posted, "Didn't Magic Johnson get cured of HIV?"No, that was Overman's contribution, and your response was to him - after I'd already corrected him AND provided a link to the factual information as well (posts 12, 13, and 14)

My apologies if I was harsh. :) Glad you are going to pull through. :DWhy, thank you, I feel better already. :)

[Skeptic Ginger]

Gees, what a mess I made of that. I quoted Overman. I must have had a brain lapse shortly after. :o

[JoeTheJuggler]

edit: But wait....if he tested positive to antibodies to HIV (and if it wasn't a false positive), and if he later tested negative (and if it wasn't a false negative), then that IS the same as having an established infection that then resolved. Isn't it? Or do you mean something special about "established"?

Not if by "resolved" you mean cured. For people in that situation who stop taking their meds, the disease comes roaring back. (Last I heard, they think the virus stays in lymph nodes and is quiescent, but not eliminated altogether even when you test negative for antibodies.)

[Skeptic Ginger]

Not if by "resolved" you mean cured. For people in that situation who stop taking their meds, the disease comes roaring back. (Last I heard, they think the virus stays in lymph nodes and is quiescent, but not eliminated altogether even when you test negative for antibodies.)Just a clarification Joe, a person with HIV will test positive for antibodies regardless of whether or not the virus is cleared from one's body. You might have very low levels of detectable virus, or even undetectable since tests have thresholds below which they fail to detect things, but you would continue to test positive for HIV antibodies.

This is one thing that makes the story this guy is somehow "cured" even less credible. The lab result you would expect for a "cured" person would be HIV antibody positive and repeated failure to detect any HIV virus.

[BillyJoe]

Yep, when the infection is cleared, the antibodies remain but the antigens disappear.