Date:   6/17/2008 3:21:40 AM ( 16 y ago)
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URL:   https://www.curezone.org/forums/fm.asp?i=1196529

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Hi Otimus,
First, I’d like to say that I’m not really an “expert” on these forums – I’ve been HIV+ for many years, I keep up on the scientific literature, and I work in a related field, but I’m certainly not a moderator here, involved in the alternative remedy industry, or profiting from HIV in any way. That said, I’m happy to help in any way I can.
I don’t believe that things without scientific proof CAN’T be any good – I just personally can’t recommend them. Anyone is free to try whatever they wish. They just need to be aware that there is no proof behind it, because others often make claims that are unsupported (i.e. “100% success rate!”), and it may be true or false. Of course, something without scientific proof may turn out to be very good, even excellent, but it may also turn out to be very bad. The problem is that without proof, it is difficult to know. Charlatans and scam artists are very good at what they do, and they have testimonials and trolls on internet forums who are just as convincing as those who believe that they have legitimate cures. This is why I believe that caution is warranted. However, these are decisions that each must make for himself. I do not what country you live in, or what your circumstances are, but I live in the US, I have health insurance and a scientific background, which makes me more fortunate than most people in the world when it comes to making decisions about my health. I have access to compassionate, knowledgeable doctors and scientists, medications, a wonderful laboratory, and information that many are not fortunate enough to have. I am acutely aware of the difficulties of accessing such resources in other countries (as well as the US for many people), and do not begrudge anyone with HIV (or without HIV) the right to make their own decisions. Not being ill at the moment (I have not been severely ill with AIDS in over a decade), I would never judge someone who was sick with HIV/AIDS, saw a bit of hope in an alternative remedy, and chose a different path. All I can offer is information, my experience from many years living with this virus and learning about it, and my opinion. Others are free to take it or leave it.
I want to apologize for my long posts that came off as too academic – my intention was to impart information, not to bore or to come off as snooty. Sorry about that. As with all things, apologies are pretty meaningless, so all I can really do is try to do better in the future. I will therefore leave all of the Science out of this one (which takes effort, you know!), and if anyone has any questions about the science, they can ask.
The medications I am on are not particularly special – they are FDA-approved and available by prescriiption to HIV+ patients in the United States (as opposed to unapproved medications which are available only through compassionate access programs). I am hesitant to tell people my regimen only because there is a tendency for people to try to copy it wholesale (i.e. take the exact same medications that I am taking), and no two patients are alike. I know three or four patients who are on the same regimen, but the vast majority of patients are on different combinations than I am. I will tell you the drugs I am currently taking if you really want to know, but if your patients have never been on drugs before, my regimen probably wouldn't be appropriate – it would be overkill. What I would rather do is know a bit about your patients and then maybe I can suggest something (but I’m NOT a doctor. A doctor really must be deciding what your patients should take. I would just be telling you what I would take under the circumstances, or what an American doctor would most likely prescribe, or what would be most effective with the fewest side effects). As complete a patient history as possible (viral load, CD4 count + percentage, opportunistic + concurrent infections, any allergies, previous history with antiviral drugs [when, how long, what happened, why they stopped], any viral genotype or phenotypes that have been done, any other medications, any other illnesses) would be very helpful – the more information, the better. If you still want to know what medications I’m on, I’m happy to tell you, but like I said before, I don’t think it’ll help you much if your patients haven’t taken medications before. Unless your patients have already taken antiviral drugs before (and developed resistance to them), you’d just be paying extra for a medication that wasn’t any better for them. Also, regarding free assistance for your patients, what country are you in?
Very quickly on low dose naltrexone (LDN) (I don’t want to get too academic on ya!): I have actually not heard about this one in about a decade! Before antivirals came out, there was some interest in this one as an immunomodulator or immune-booster, mostly by Dr. Bihari, who treats a lot of people in NY. I actually tried this one myself (twice! both pre-HAART and post-HAART), but eventually stopped because it didn’t seem to do anything and I decided to start a medication that it interacted with (which very few people will have to worry about). Some conventional docs tried to do a trial with it after HAART came out but they couldn’t recruit enough patients.
What do I think about people taking low-dose naltrexone? I think it’s 99% sure that it’s safe to try (with one caveat: do not take it if you are on opiates – i.e. morphine, codeine, etc.) – low likelihood that anything BAD will happen if you try it. What’s unclear is whether it helps. Plenty of people tried it and didn’t do well. One example from 2002:
“I started seeing a doctor in New York City for HIV infection a few years ago. My t-cells were around 700. He told me that I didn't need anti-virals at the time. He did prescribe a low dose of Naltrexone which he said stops HIV infection from progressing to AIDS. I followed his advice and took the Naltrexone each night. When I went for repeat labs in November of 2001 I found out I had progressed to AIDS with a t-cell count of 178(9) and a viral load of 224000. As you can imagine I was very upset. My question to you is: is it legal for doctors to promote this drug as an AIDS treatment when it is not approved by the FDA for such purposes? I am now on anti-virals and I am recovering. I just don't want this to happen to anyone else.”

http://www.thebody.com/Forums/AIDS/Meds/Archive/Alternative/Q142481.html

AIDS Treatment with Naltrexone?

It’s certainly not a cure-all (as shown by the fact that Dr. Bihari gives it to hundreds of patients and only 18 of them have managed to go without antivirals – and in a large group of patients, you’d always expect some number to be able to maintain high T-cell counts without antivirals. Is 18 higher than what you’d expect normally? I don’t know! It varies a lot from practice to practice, based on what population you’re serving). Is there anything to recommend its use? I don’t know! It didn’t work for me. It didn’t work for some of my friends. Does it work for some people? I don’t know! Is there anything to be LOST [other than a small amount of money] by trying it? Not that I know of! It may potentiate the effect of antiviral drugs. It’s cheap. On the other hand, it does have to be formulated (it’s only available as a 50mg pill, at least in the US, and the higher dose CAN have more effects than the low-dose proposed, and may actually have different effects, so it’s best to go with the low dose – of course, it’s not that hard to take a 50mg pill and divide it into 10 doses. If enough people start taking LDN, I’m sure someone will manufacture it. Right now it’s mostly used for narcotic addiction, alcoholism, and other behavioral disorders where endorphins play a role and you need the higher dose. It’s off-patent and available as a generic so a manufacturer in Africa or anywhere else could make LDN very cheaply – it’s very cheap to make – and distribute it without a problem). Some people like it for preventing lipodystrophy, but that’s an issue with antivirals, not HIV itself.
Again, I don’t want to get academic, or go into the Science of why it may or may not work unless anyone’s actually interested. Bihari’s theory on interferon-a seems wrong, but that doesn’t mean it doesn’t work. There are a few people who swear by it, even though most people stopped talking about it a while ago. I wouldn’t discourage anyone from trying it. Again, it’s one of the safer things you can try (although there may be effects on mood). I’m more than happy to give a more detailed analysis of the Science behind the theory or a critique of the paper if anyone is interested (but again, I don’t want to bore people for no purpose, so I won’t do it unless anyone asks).
My belief is, and has been for a long time, that the alternative community has yet to come out with a convincing replacement for antiviral drugs (much less a “cure” – I’ll believe it when I see it. I keep seeing the spokespeople for various cures die a few years after they proclaim them roaring successes, so I’ve come to be cynical). However, I DO believe that there are many things that people can do to keep themselves healthier for a few years longer. Good nutrition and healthy habits (i.e. not smoking, using alcohol, or drugs) would probably fall into that category, at least when it comes to populations. If there were a cheap, safe supplement or drug that could extend the period of time that people could stay healthy without the need for antivirals, I would consider that an unqualified success.
Few things are likely to work for everyone. I think the alternative community does itself a disservice when it oversells its products, or tries to tweak the evidence to its benefit (as Bihari has done, even though he’s a medical doctor). The most important thing for someone with HIV is to monitor their condition so that if what they are doing ISN’T working, they can try something else. I don’t think it is unreasonable to grab hold to the first think that looks like a raft if you are sinking in the ocean – so long as you check every few minutes to make sure that it is really a raft and not a stone that is pulling you deeper under water. If you are not in the United States or a similarly wealthy country, I realize that my perspective may sound a bit lofty to you. Here, we have the luxury of trying one therapy, running endless tests, and trying other ones. This is a luxury that the vast majority of people with HIV in many countries are not afforded. I do not begrudge anyone the right to try whatever they wish, and I understand that desperate times may call for desperate measures. However, since the beginning of this epidemic, I’ve seen greedy people preying on the desperate, willing to take their money while offering nothing of value. I keep an open mind that some alternative therapies may offer something of value. However, I’ve also seen some crazy rumors about “100% cures” promoted by people who do not even have a rudimentary understanding of this illness. About 70% of HIV+ people use complementary and alternative therapies. I’ve used them myself. As far as I can tell, they don’t make a huge difference. That is not to say that they do not make some difference, or that individual ones do not make moderate differences. But it is to say that, so far as anyone can tell, there is no commonly (or even somewhat commonly) used alternative or complementary therapy that makes such an outstanding difference that everybody on it is living significantly longer than everybody who is not on it. Perhaps they have not been studied enough. Perhaps one problem is that the people who are “deepest” into alternative medicine are those people who refuse to allow doctors or scientists to examine them. If so, they are doing a disservice to their cause (and to all other people with HIV). I could write pages about why there is not much more research into alternative therapies for HIV in the United States (if you are interested in the actual reasons for this, rather than the Conspiracy theories, I will write more on this, but I do not want to bore you if you are not interested. There are some practical reasons for much of the recent lack of interest in the United States. The sad thing about it is that most of the research into this disease takes place in rich countries like the United States, and therefore targets the needs of our citizens. Alternative therapies may have SOME value, but as far as anyone can tell, they’re not as effective as antivirals, and few patients in the US will be replacing antivirals with alternative therapies anytime soon. However, in most countries of the world, not every citizen with HIV has access to antivirals. If alternative therapies are cheap, safe, and simple, and offer SOME benefit, well, that is better than nothing. HIV treatment activists in both rich countries and poor have been primarily focused on universal access to antiviral drugs. However, despite all of our efforts, this is still very far from a reality. One could argue for more research into alternative therapies that may be less effective but cheaper and more readily provided to everyone before antivirals are necessary or available for everyone. At the very least, there should be research to figure out which of the variety of alternative cures that people take are most beneficial so that people get the most out of their money. It is difficult at times to know how the time and money of activists is best spent to most effectively improve the situation).
I do not know if low-dose naltrexone will help. I would certainly not bet my life on it, or avoid the use of antiviral drugs in the hope that it would work. But, if I were in a setting where I did not have access to antiviral drugs, would I give it a try? Yes, perhaps, but only if it were affordable (i.e. I would not spend money on it instead of food or other household necessities, but if I had a bit of money to spare, I suppose I would try it). I would also consider taking it if I were already on antiviral drugs, in the hopes that they would potentiate the effects and prevent the development of resistance. Again, this is if it were affordable.
As far as OPC herbal cancer cure goes, I would like nothing more than to see something cheap and easy like Sutherlandia OPC herbal cancer cure work. However, I fear that it is another scam to take advantage of those who are desperate, afraid of dying, and have nothing to lose. If it DOES work, I believe they have a moral responsibility to run a few very simple tests (they are, after all, making plenty of money selling this product; they can spend a small amount of those profits running some tests) to show the rest of us. If I had a cure for AIDS, I would believe it was my moral responsibility to do everything in my power to make sure it got to the largest number of people possible, because there are precious lives on the line. It makes very little sense to me why if they are humanitarians and they believe their product works (they claim both), they do not do this. My main point on OPC herbal cancer cure (which may have gotten lost in the shuffle) was the following: I have no idea if it works, at this point, nobody does. DQ has not known a single person to have used it for HIV. However, the person who conducted the clinical trial on the product has such a problem with misrepresentation and failing to tell the truth that he is simply not trustworthy. Is it worth trying the product? Perhaps (again, I have no idea, and neither can DQ). But I would not want to give my money to support such a shady character, so if I wanted to try the product, I would personally mix the ingredients on my own. However, this is a very personal decision (whether to not buy a product from someone because their behavior has been dishonest or morally reprehensible. This comes up with pharmaceutical companies a lot. Manufacturers of certain HIV medications – Abbot comes to mind – have engaged in reprehensible behavior, and individuals have to decide whether to boycott their products, when they rely on those products to stay alive. The obvious answer in such a situation is “no!”, but here, OPC has not yet been proven effective, and it’s a bit of a moot issue because you can make OPC yourself (it’s just Oleander + sutherlandia) without supporting their dishonest promoters.
Last thing: I’m not sure where the 75% antiviral failure number comes from, but that’s not right. The numbers depend on how “failure” is defined (immunological failure vs. virological failure; it’s usually defined as the latter, even though death would usually be determined by the former; how strict the definition – i.e. early studies sometimes counted ‘blips’), when the study was taken (failure rate has gotten better and better since HAART has come out), what time frame and regimen you’re looking at, what population (new, drug-naive patients are easy! those of us who are treatment-experienced and who have a ton of drug resistant mutations are much harder to treat). I can say, however, that I know hundreds of people with HIV and have 2 friends who are HIV physicians. In the last 10 years, I’ve had about 20 HIV+ friends and acquaintances die. Only one of them started HAART in the post-HAART era and died of AIDS. Everyone else either died of something other than AIDS or had been pre-treated in the pre-HAART era. Everyone else I know who started HAART since it came out (even though many, if not most of them, got HIV well before then) is still alive. In the United States, we have lots of treatment options, so 75% do not fail HAART in the way you describe (drowning with no chance of survival).
Anyways, sorry if this was too long and/or boring. I tried to keep the science out. If you have any questions, I'm happy to answer.
 

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