Answers Part I! by happyhealthygal ..... AIDS & HIV Forum
Date: 7/15/2008 7:17:08 PM ( 16 y ago)
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URL: https://www.curezone.org/forums/fm.asp?i=1215933
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Hi 100483!
Good to have you here, and I’m glad that my posts have been helpful to you. First let me say that I’m sorry about your ex-girlfriend’s recent diagnosis, as well as for what you’re currently going through. I really hope that the tests turn out negative.
There are a lot of questions here, so I’m going to have to take this a bit at a time. I’ll just go through chronologically and answer as many as I can whenever I have a bit of time.
Question 1: "I've just recently discovered an ex-girlfiend has AIDS. We were together a year and a half and had a normal sex life with lots of vaginal and oral sex (never used condoms). She reckons she caught it a year before we met. Statistically what are the chances I've been infected? I've never had any symptoms and am in perfect health two years since we split up”
Getting tested can be tough (especially if there is a waiting period before you get your results, or if you have to wait through the “window period”), but you really should get it done ASAP. The fact that you’re already researching cures for HIV makes it seem like you’re already pretty anxious about this. The results may just come as a huge relief!
I don’t like to get people’s hopes up, because these things are unpredictable, but I would guess that more likely than not, you’re HIV-negative. The oral sex risk is pretty damn negligible, and clade B HIV (this is the dominant subtype in the United States) transmits very inefficiently through insertive vaginal sex. All I can give you is population estimates, and these really can’t be applied in any meaningful way to individuals. The per-act risk based on population studies for HIV transmission from insertive vaginal sex with a woman confirmed to be HIV+ is 5 per 10,000 (that can obviously be reduced to 1/2000, but these estimates are just that – ESTIMATES!). It is impossible to put a precise number on the probability that any sexual exposure or series of exposures will lead to infection – some people get infected after a single encounter with an HIV+ partner, other people have unprotected sex with an HIV+ partner for many years without being infected. However, since you asked, based on this estimate, even if you had vaginal sex 1000 times, the probability of contracting HIV is well under 50% (it’s about 40%. With vaginal sex 500 times, it’s about 23%, with 300 times, it’s about 14% - the calculation for the risk based on how many times you had sex (s) would be (1 - (1999/2000)^s) x 100%. This should accord with your intuition – that you took a very real risk (though unknowingly), and there is some chance that you contracted HIV, but that there is still a good chance that you are HIV-negative. I’m giving you a statistical estimate because you asked, but as I said before, they don’t apply that well to individual situations because they don’t account for why one act of insertive vaginal sex with an HIV+ partner is more risky than another. A few examples: if you are circumcised, your risk of being infected with HIV through vaginal intercourse is substantially lower than if you are uncircumcised; the higher the woman’s viral load, the higher the risk of transmission; risk of transmission is higher if you have open sores on your penis or any other STDs causing inflammation or tissue trauma; and so on..... None of these variables are controlled for in the statistics I gave you, so your real risk (if such a thing could be calculated) might be very different than the numbers given. Fortunately, you don’t have to worry about theoretical likelihoods that you might have been infected – you can get tested and know for sure!
Symptoms (or lack thereof) are really not very helpful in predicting whether someone has been recently infected. About half of all people experience an acute illness immediately following infection (which resembles mononucleosis), and the majority of people get a rash or fever, but there is no symptom (or lack of symptom) that is sensitive or specific enough that it can allow even a reasonable guess as to whether a person is seroconverting.
If you’re avoiding testing owing to privacy or other social concerns, that is understandable. I’m a big supporter of anonymous testing (as opposed to “confidential testing”, which is often treated as if it provided the same privacy guarantees, when it obviously does not). In many places, it is hard to get a TRULY anonymous HIV test (some places use “unique identifiers” based on a few letters of your name, your birthdate, etc. The fact that they’re “unique” should let you know that it wouldn’t be all that hard to trace them to particular individuals if someone wanted to. If my only option was to get tested somewhere that used unique identifiers, and preserving privacy of test results was a major concern, I would lie about my name and birthdate). If you want an anonymous test and don’t know where to get one (i.e. if a google search doesn’t turn up any truly anonymous sites in your area), or if you are nervous about walking into a testing site, one option is an at-home test (which has both pros and cons. The pro is obviously the convenience and the privacy. The cons are that you can’t do it for free and that telephone counseling may not be the same as face-to-face counseling). A lot of people sell “home HIV” tests on the internet and such (of course, if you’re main concern is anonymity, purchasing a test over the internet using your credit card seems a bit strange, but perhaps some people worry more about the guy at the check-out counter than the internet seller).
Only one test is actually FDA-approved – it is called Home Access HIV Test (there’s also an express version). Anyone selling another test claiming that it is FDA-approved is lying, and their tests may not be accurate (the FDA found that at least some of them returned “negative” results on blood that was known to be positive). I therefore wouldn’t recommend a non-FDA approved test. The approved home test is about $50 (you can get it at a drugstore paying cash. Ask the pharmacist. You can even going in wearing a trenchcoat and those funny glasses with a fake nose and moustache if you want. Although that would probably just draw more attention to you!). My partner does this about once a year (even though his risk is minimal). He prefers it over having my doctor test him (privacy is not his major concern. He just likes testing at home). If you have no problem going to a clinic, though, there’s really no reason to waste the $50.
Question 2: "Do you have any side effects from your meds?"
My current meds? Nope. But some people on the exact same meds as I am will have side effects (there are a few HIV meds where there aren’t any more side effects than on placebo, but inevitably some people will experience something. For the majority of HIV meds, side effects are commonplace but not universal). I’ve also been on meds in the past that had some awful side effects. Regimens for treating HIV have gotten MUCH more tolerable over the last decade. Back in the 90s, taking HIV meds was often like a full-time job, and a horrible one at that. With older medication combinations (e.g. full-dose Norvir or a combination with ddI + d4T), side effects were close to inevitable and were often severe. HIV meds vary dramatically in tolerability. A novel drug like Selzentry has no side effects as far as anyone can tell, but a drug like Crixivan has enough side effects for your whole neighborhood! I won’t go through all of the medications available today and their potential side effects, because that would be quite a lengthy dissertation.
There are a few things to keep in mind: with any combination, there will always be somebody who will have a horrible side effect or reaction. With (almost?) any combination, there will be a whole lot of people who have “mild” side effects and reactions. On a lot of protease inhibitors, a common initial side effect is nausea. Some patients never have it, some patients have it and it goes away after a few weeks, some patients have it but are able to tolerate it or manage it, and for some patients it is so severe that they stop taking the drug. What you would really like to see for each drug is a chart showing each side effect and what percentage of people fall into each category. You’re not going to find that (you’ll be able to find numbers of what percentage of patients experience a given side effect, but not a breakdown in terms of severity). It’s also practically impossible to predict with any accuracy whether a given person will experience a given side effect (there are some exceptions to this). What you can easily find for each drug is the percentage of patients who have side effects so severe that they have to stop taking it. The medication combination that is most commonly prescribed to drug-naive patients today is Atripla (a pill containing the three medications Sustiva, Viread, and Emtriva, so you only have to take one pill a day). In one study, 4% of patients discontinued to adverse events. However, for many combinations, the numbers of patients who quit because of adverse reactions is higher (this is NOT a promotion of Atripla. I am not on Atripla and never have been on it and never will be on it because I am resistant to Sustiva. Like with any other combination, there are pros and cons. There are patients who would be better off with something else. I only use it as an example because it is the most popular first-line regimen today. With so many medications available today to choose from for drug-naive patients, the popular regimens tend to be some of the most tolerable ones).
I’m not sure if that helped to answer your question. In general, I would be loathe to extrapolate too much from any one person’s experience. A lot of people assume that if something worked beautifully for them, it must be a miracle drug/herb/diet/etc. and will necessarily work for everyone. Even where there’s a ton of data showing Drug A to be vastly more tolerable than Drug B, there will be people who find Drug B a piece of cake and Drug A a nightmare. If it turns out that you are HIV-positive, the likelihood is that you have a lot of options. Nobody will ever be able to guarantee that a given combination will be tolerable for all people (I don’t think such a guarantee exists for any drug, herbal or pharmaceutical, but there are a lot of HIV meds where side effects occur frequently enough that they’re anticipated), but for a drug-naive patient with susceptible virus in 2008, I would be quite optimistic that a combination can be found that has, at most, minimal side effects. I could not have said this 10 years ago, or even 5.
Question 3: I gather you've tried Sutherlandia OPC herbal cancer cure with no success?
Nope, couldn’t take if I wanted to because the formulation has Sutherlandia (hence the name!) in it, and there’s too a high risk of interaction with two of my medications, which are metabolized by the liver enzyme that Sutherlandia inhibits.
I’m no fan of the man who sells Sutherlandia OPC herbal cancer cure and who did the one “clinical trial” on the stuff. The paper reporting the clinical trial results contained so many distortions and outright falsehoods that I do not trust him as a clinical researcher or a reliable source of information. However, I have no idea whether or not the product is effective (I maintain that at this point, nobody does!). South African doctors are doing a large clinical trial on Sutherlandia (one of the two ingredients), and the results should be out next year.
I’m optimistic that Sutherlandia will show some minimal or moderate benefit (although I’m not sure it will persist over extended periods of time). I’m doubtful, however, that it represents a “cure” or even a viable stand-alone treatment option (but I’ve certainly been wrong on things before! I cringe a bit to remember thinking that passive immunization might be a viable therapy. I also thought that top-notch HIV doctors would probably start testing CD38+ CD8+ T-cells in certain situations, and thus far, as far as I know, they have not). As for Sutherlandia OPC, which I believe is a proprietary formula of 20% Sutherlandia, 80% Nerium oleander, I wish the proprietors would do some honest studies on the stuff. If it turns out that Sutherlandia offers benefits, it will important to test whether OPC herbal cancer cure offers greater benefits (i.e. whether the addition of Oleander is superfluous, or even detrimental).
Right now, I can find no compelling evidence for its claims. Its promoters make claims like “100% effective in completely reversing low CD4 counts in HIV” and “1000 people have taken this product and no adverse events or treatment failures have been reported. Every one of them is doing great and is still alive!” (I’m paraphrasing here). This is very disingenuous. No adverse events or treatment failures have been “reported” because nobody is monitoring the use of these products or keeping track of the 1000 users and how they are doing - most of them could be dead by now (chances are that some of them are. Even in an HIV-negative South African population of 1000, the chances are that some of them would have died) and the people selling and promoting the product wouldn't know it. You can’t say something hasn’t been found until you’ve actually looked, and you can't make assumptions about how people are doing without any basis other than a belief that they must be alive because you believe the product works. There is no evidence of complete reversal of CD4 counts – in the only data we have (even though the trial was terribly flawed on many levels), the increase in CD4 counts did not bring the patients up to “normal” levels (which is what I believe “complete reversal” implies; “partial reversal” would be a more honest descriiption of what occurred). I could go on and on about this, but in essence, they are distorting and over-selling. OPC may offer real benefits (I have no idea), so it’s a shame that its proprietors like to play dirty with the truth.
Question 4: "What other alternative therapies have you personally tried?"
Most of my personal experimentation with alternative therapies happened many years ago (long before Sutherlandia OPC was around). For over a decade, I have been on antivirals with a suppressed viral load and good immune function. My personal preference is to take no more drugs than necessary (although in my early years of infection, I was popping pills like Neely from Valley of the Dolls). Since my health is presently maintained with the use of antivirals, taking Oleander on top of them would seem to fall into the category of “taking more drugs than necessary”. It would also be impossible to know whether it was actually having an effect, since I’m already doing very well. Over the years, the number of supplements I take has therefore slimmed down considerably.
Years ago, my husband and I tried many alternative remedies. It’s impossible to say in retrospect whether any of them worked for me (they certainly did not work for him) – if they did, the effect was moderate at best because I eventually developed AIDS (that is, perhaps they slowed the descent, but that’s impossible to evaluate in a single person because I have no idea how quickly I would have descended otherwise; it's also possible that they sped it up). I was always a bit skeptical of devices, patches, magnets, or anything metaphysical, but my husband and I were willing to try a whole host of ingestible supplements. Up until he got very sick, he was taking more supplements than your average bodybuilder (I was always more skeptical. This was prior to the internet era, but still, it always seemed to me that if there was something causing dramatic improvements, word would get around and everyone would start taking it. Indeed, that’s how it often worked: someone would claim a dramatic improvement, lots of people would flock to that product, then the person who originally said it helped him would die and/or so would a lot of the other people on it. That doesn’t mean that these products didn’t do ANYTHING beneficial, just that over the long haul, the claimed benefits were not pronounced).
I doubt that I could even recount everything that I tried in those days (much less everything my husband did). Many of the alternative remedies I tried are probably not things most people would expect to help them today, so I’m not even sure it would be relevant, but you asked! Let’s see, I did humongous doses of Vitamin C, a tea concocted of Chinese herbs (if I knew what was in it then, I certainly don’t recall now! For a long time, Chinese herbs were very popular. For a period of time, even I was more hopeful that a cure would come from Chinese herbs than pharmaceutical companies), Valerian, glycine, chamomile, some herb named Shissandra (I may be spelling that wrong; that’s how it sounded), and large doses of various vitamins (don’t ask me what the glycine was meant to do! In retrospect, I think that in this instance I was probably being given stuff for anxiety rather than immune functioning), NAC, a macrobiotic diet with lots of garlic, special mushrooms, and a half dozen types of vitamins and amino acid supplements (the diet didn’t last long!), St. John’s Wort, Echinacea (not recommended today!), naltrexone (which is certainly alternative, even if it’s not natural), licorice extract, compound Q. The list could go on, if my memory were better. My husband was more experimental than me – if I was willing to swallow something, he was willing to inject it. Not all of the things we took were available legally at the time, and some of them were very expensive. He also tried some experimental therapies that today would be considered “mainstream” (even though they’re not used today, they were being offered by mainstream sources).
It’s very difficult to say which things, if any, were beneficial. For one, we were taking a zillion different things at a time. He also took the antivirals that were available in the late 80s (AZT) and early 90s (ddI). My general impression is that none of the things we took or that I saw others take was beneficial enough to be promoted today (although some people will still do so!).
On the other hand, I’ve often found alternative therapies to be quite effective for symptomatic relief (for example, I take alpha-lipoic acid and acetyl-l-carnitine for peripheral neuropathy, and it works at least as well as the drug Neurontin did. I would never, however, suggest that it is a “cure for neuropathy” or that it would work for everyone. Acupuncture, however, was not particularly helpful). I used to have problems with nausea and diarrhea and I found ginger + garlic to be a lot better than nothing, but the pharmaceuticals Zofran + Immodium worked FAR better than the supplements (for the Zofran, though, at an insane cost, though! REALLY insane, more than some HIV meds. I am certainly glad that I no longer have to deal with nausea). There IS an unaltered natural remedy for diarrhea that is known to be incredibly effective, but it’s not legal to possess it without a doctor’s prescriiption and I can’t think of a single situation where a doctor would prescribe it instead of something else: raw opium.
I’m quite open-minded to the idea that alternative medicine can offer HIV patients something that helps control the virus. I’m doubtful that anything it offers will be a “cure” or even a treatment that is effective for everyone. When I see an advertisement or a post from a devotee saying “100% effective” or “the SECRET cure for AIDS!,” I roll my eyes. As I’ve said before, I certainly know (and knew) plenty of people who would swear on their life that alternative treatment X was working miracles. Maybe it was, but a lot of people on remedies that then looked promising ended up dying. What I am NOT open-minded too is to people who lie and distort information in order to make money off of desperate people.
Even though I’m not opposed to the use of alternative remedies (I will advise against the use of particular ones if they appear dangerous or if their proprietors are obvious lunatics or liars), but I think that you have to go into medical experiments (“we are all an experiment of one”) with high hopes but reasonable expectations. Expecting alternative medicine to provide a cure for a virus that is extraordinarily difficult to eradicate is not a reasonable expectation. The people marketing most of these products do not even seem to understand the difficulties that HIV poses in terms of eradication. I have a major problem when the proprietors or proponents of alternative remedies proselytize based on junk Science or Conspiracy theories (without compelling clinical evidence or a plausible theory of why their products work, I suppose that the only thing some of them can do is claim that nobody knows about them because they are being deliberately suppressed).
Most HIVers employ some form of alterative therapy. There have been some studies of these that you can look up. The majority of patients who use alternative therapies for HIV think they help with well-being but that the benefits they offered were mostly psychological. The thing is, nobody really knows.
Question 5: "I gather your partner underwent the Beck protocol with no success?"
Nope, not my late husband. The man I knew who was doing Beck was a dear friend who has since died. Like many others who were sick in the late 80s, he did what amounted to sequential monotherapy, adding new antivirals as they came available so he never was actually taking more than one drug to which his virus was fully susceptible (this is before resistance testing, but it was clear even then that this was happening). He somehow heard of the Beck protocol in the mid-90s, although I'm not sure if the protocol has changed since then because I don't think he was using ozone. He died in 1995.
The man I have been with for the last 8 years is HIV-negative, has no health problems, and works in the sciences, so I would be pretty perplexed if he started doing a Beck regimen. If my current partner started Beck, I might just drag him to the doctor for a mental-status exam because I would consider that a significant and unexplained personality change!
Question 6: "Do you see any value in Colloidal Silver or ozonated water?"
As far as ozone goes, this one was actually tested in HIV patients many years ago:
http://www.ncbi.nlm.nih.gov/pubmed/1685651
(not ozonated water, but removing the blood, treating it with ozone, and returning it to the patients) – no effect. This is the abstract for the phase II trial. You’ll see it reported that in the uncontrolled phase I trial, a few patients appeared to show some improvement. This pattern (preliminary results suggesting a benefit, followed by more rigorous – and often longer-term – trials showing none) happening over and over again. This is why I’m so hard on the proprietors of products who claim major benefits because of in vitro (test tube) evidence or preliminary/inconclusive results in humans. To me, the situation now is VERY different than it was 20 years ago. 20 years ago, if a person believed that they had something that could help HIVers but had scant evidence that it worked, my response would have been “I don’t care! Give it to us! It’s better than nothing!”. These days, I feel as if people are unnecessarily purveying false hope for their own personal gain. Because of what is medically available now to prolong the lives of the HIV+, “better than nothing” just isn’t good enough for me (and with many of these remedies, it’s actually unknown whether they’re better than nothing! I strongly suspect that some of them are significantly worse than nothing!)
According to a professor of chemistry, ozone (03) is highly unstable and by the time ozonated water gets to the consumer, the ozone has decomposed to just-plain-oxygen (which he says is a lucky thing, because ozone can be very toxic!).
http://www.chem1.com/CQ/oxyscams.html
Colloidal Silver : Well, with no data at all, it’s hard to guess whether something is effective. As far as “any value” goes, I have to say that I’ve gotten far more picky about what sort of risks I will take for minimal or moderate value.
Every medical decision I make is about risks vs. benefits. The riskier something is, the more benefit it has to offer before I am willing to try it. Essentially, if you are experimenting with therapies that operate outside the realm of scientific knowledge, you’re going to be doing a lot of guessing as to what risks and benefits they offer. Because there are real dangers from taking Colloidal Silver , it would have to have some proven benefits that I couldn’t get elsewhere before I would even consider it. This brings me back to “I’ve heard these promises before” (and people are still making them about ozone!). I stand by what I've written on CS before.
Question 7: "In your opinion is there any merit in a program of herbal detox and immune system strengthening?"
“detoxification regimen” and “immune booster” are buzzwords that seem to sell a lot of products, but they can refer to all sorts of different compounds and I rarely see a reason why any of them would have a good effect on HIV. I’ll take this one-by-one:
Herbal Detoxes:
AFAICT, most of these are claimed to rid your body of unidentified “toxins”. They tend to use the word “toxin” in a very imprecise way (toxins are potentially damaging substances made by cells, not man-made chemicals or pollutants or food additives ), so that you’d think their products could remove everything from viruses to bad vibes. Various illnesses and vague symptoms are attributed to unidentified “toxins” (the way in former century, they might be attributed to demons or bad humours). From what I’ve seen, most of the herbal detoxes are crammed full with laxatives and their main point seems to be to make you shit something nasty (I guess the idea is that if you shit something nastier than usual, you’ll assume it’s because the unidentified toxins are coming out?).
Apparently “toxin” means different things to different people. When I hear the word “toxin”, my first thought is not “environmental toxins” but rather the exotoxins secreted by bacteria, which would seem to qualify as the sort of toxins such products are claimed to help with (I doubt that bacterial endotoxins would qualify). No doubt that the toxins secreted by bacteria can make you very, very sick (not all bacteria secrete toxins, but plenty do: tetanus, anthrax, diptheria...). A person with cholera will die of dehydration (or shock) because cholera toxin basically causes all of the water to be sucked out of the cells in their small intestine, leading to tons of watery diarrhea (think
like a hydraulic engineer – more water and everything moves through quicker! Some laxatives work by pulling water into the intestine too. Other laxatives just increase gut motility so food gets through quicker). If a person with cholera took a “colon cleanse” stuffed with laxatives in the hopes of removing the cholera toxin from the intestine, it would exacerbate the situation and make them more likely to die.
The idea seems to be either that your body is so full of toxins that it cannot eliminate them all, or that toxins are clogging up your body so that your organs cannot function. I don’t think most of the people promoting this stuff have ever taken a physiology course (I’m not going to quote specific websites because then everyone will jump on me and say “no, our theory of toxins is different! Everyone knows THAT one is bunk. They don’t use the right herbs”). The human body is pretty impressive! Organs like the liver, kidney, and lungs are BUILT to get rid of nasty chemicals and they’re very good at what they do.
It seems that a lot of people use detoxes to help with weight loss, and I see why! Master Cleanse, which claims to be a detox, is basically a starvation diet; the herbs that people recommend for “detox” appear to be include a lot of laxatives and diuretics. There are indeed some exogenous substances that your body has difficulty getting rid of (silver, as in colloidal silver, can build up and be impossible to remove) – starving yourself and inducing diarrhea is not going to magically create a mechanism for removing it. If your body were full of so many poisonous substances and it lacked the capacity to eliminate them, you’d be SEVERELY ill. If toxins were clogging up the liver, forcing it to release poisons into the bloodstream, you would be severely ill (in fact, this happens with liver failure: your blood fills with ammonia because the liver is unable to convert ammonia into urea, and since ammonia is neurotoxic, this would eventually put you in a coma and kill you even if the other sequelae of liver failure were absent).
I see no reason why any “detox” could help with HIV (unless we’re talking detox from certain illicit drugs, in which case, there will often be immunologic benefits). If diarrhea and starvation could remove “toxins” that contribute to HIV pathogenesis or build up when a person is HIV-positive (the people promoting detox for HIV have various theories about why they should work, some of them frankly bizarre), then many (if not most!) AIDS patients would not have a problem: cachexia (lack of appetite) and severe diarrhea often accompany AIDS. All the evidence is that these contribute to disease progression rather than eliminate nasty stuff that is causing the illness.
The claims are extraordinarily vague (many sites say that EVERYONE needs to be doing detoxes – that’s good marketing, no?) – to me, this is a bad sign. If there were any truth to the claims, there would be a compelling explanation of what these toxins are, WHY our bodies are suddenly unable to handle them (saying “the environment today is full of terrible poisons that our body can’t handle, and our body can’t handle them because they are terribly poisonous” is a tautology, not an explanation), and how the product magically enables the body to handle them.
Some alternative practitioners have a lot of gall! They talk about pharmaceutical drugs being toxic, and then offer herbs to detoxify your liver (and for every other complaint imaginable): Check out Arch. Surg. 138:852 2003 on liver transplants in Oregon: alternative herbs now the primary cause of massive hepatic necrosis that requires transplantation (even more than tylenol overdose or all the hepatitis viruses combined!)
Some colon detoxes involve eating clay. Eating clay (perhaps especially clay from exotic locations, which are often promoted as having special healing abilities) can be dangerous! Nobody is really testing these clays, and people have gotten nasty stuff like mercury poisoning, lead poisoning, and roundworms from eating clay for health reasons.
Immune Boosters:
Assuming that it even works (most of these have not been rigorously evaluated in actual human beings), a product that ‘strengthens’ the immune system can do so in hundreds of different ways. There are many different types of cells in the immune system, and when you increase the activity of one, you’re often necessarily decreasing the activity of others. The immune system is fabulously complex (anyone who takes the time to learn immunology, or other aspects of human physiology in detail, will be amazed!) and it would be hubris for anyone to claim that they had a complete understanding of it (which is why no legitimate immunologist ever would!).
One problem with taking “immune boosters” for HIV is that it’s often not known exactly what part of the immune system they’re enhancing (if any), and how they’re doing it. In general, the immune systems of people with HIV are already over-activated (in fact, this is a big part of the reason why people progress to AIDS), and non-specific immune activation, or specific activation of the wrong parts, can be quite harmful.
It might surprise a lot of people to learn that the majority of people with HIV actually mount very strong immune responses to the virus. When a person gets infected, there is a period known as the “acute period” or “acute infection”. During this period, viral load skyrockets and CD4 count plummets. But, within a relatively short period of time, viral load will fall to a lower level and CD4 counts come up closer to where they were before. Why does this happen? Because your adaptive immune system has kicked in, and the virus can’t run as rampant anymore. The problem is, HIV can escape this immune response by mutating. It’s a constant cycle: viral load comes up, immune response kicks in, viral load comes down, virus mutates to escape immune response and comes up again, thus necessitating a new immune response. It takes at least a week or so to mount a new immune response to the mutated virus, and by that time, it’s already gotten the chance to replicate relatively freely for a while. Because of the constant cat-and-mouse game, the immune system is terribly over-activated (there are plenty of other reasons that HIV causes maladaptive immune activation, but I won’t get into those here). Immune activation is most likely the most significant driving force behind disease progression (this is something that most laypeople, apparently including most denialists, don’t seem to understand. Progressive immunosuppression in the face of dramatic and unhealthy immune activation is a reasonable descriiption of the disease’s course. If anyone wants to know more about how this works, just ask. Or type ‘HIV pathogenesis immune activation’ into google scholar or pubmed and you should get a ton of articles).
Creating more immune cells is not very difficult (for the best known example, you can take a synthetic version of IL-2, sometimes aka “T-cell growth factor”, and you’ll suddenly have more T-cells!) – unfortunately, having more cells of a given type does not mean that you will have a more effective immune response to a particular virus. There are two arms to the immune system: the innate system and the adaptive system. It’s specific parts of the adaptive system that you need to fight HIV, and the cells of the adaptive immune system are antigen-specific (there are exceptions, but at the very least, the adaptive response you WANT is antigen-specific. That means there is a subset of T-cells, a small portion of total T-cells, that specifically mount a defense against HIV. The majority of T-cells, which are not specific to HIV – they have their own antigens they’re specific too. That T-cell specific to an influenza antigen is just sitting there, waiting for the flu to happen by! – will not be helpful to fighting HIV, and in fact, since HIV infects activated T-cells, it’s possible (although this possibility should not be overstated) that it will be harmful because you will be giving HIV more cells to productively infect (here’s an analogy: your wooden house is on fire. You know that the house can’t lose all of its wood or it won’t be a functional house anymore! So you add wood to the burning house in an attempt to keep your “wood count” high. The additional wood just lets the fire spread further).
It’s hard for many people to appreciate just how amazing our immune systems are. When a person gets an infection they weren’t expecting, they often attribute this to having a “weak immune system”. This fails to give successful human pathogens the credit they deserve: they are exquisitely adapted to us, they know where our weaknesses are, and they exploit them. Some people will be more resistant to certain pathogens (genetics plays a huge role here among both the healthy and the immunodeficient, and in many instances, we know exactly how. Nutritional status is obviously important), but the fact that a virulent pathogen is able to infect you and make you very ill is generally not a signal that your immune system is weak. With many pathogens, a lot of people are infected without showing symptoms. The fact that one person shows symptoms while others do not is often not a sign of a weak immune system, but rather an overactive one! That is, a strong immune response to a pathogen can make you even sicker than the pathogen itself. Toxic shock syndrome is an example of this: it is not the bacteria (usually staph aureas, sometimes S. pyogenes, the same bacteria that causes strep throat) that is making you horrifically ill, it is the immune response it triggers (massive T-cell activation, leading to the release of TONS of inflammatory cytokines and septic shock). Yes, an immune response that is too active can kill you! A super-charged immune system will also not necessarily make you feel very healthy. alpha-interferons, for example, are a very important group of innate cytokines that do some amazing things to help cells control viral infection. You know what happens when you inject yourself with interferon-a (it can’t really be taken orally)? Fevers, fatigue and and flu-like symptoms!
The immune system is a powerful weapon! It has evolved to destroy pathogens, and for this reason, it can do a lot of damage to the host as well as to germs! When you get poison ivy, the bumps on your skin are not caused by the harmless oil from the plant; they’re caused by over-activated macrophages (a type of innate immune cell) spitting out caustic chemicals in an attempt to destroy a harmless oil that it thinks is a pathogen! When a person has certain auto-immune diseases, where parts of his immune system start treating his own cells as if they were germs, leading to an attack on his own tissues, it can make him very sick and even kill him!
Because the immune system is so potentially dangerous to the host, you really don’t want your immune system to be as active as possible. Most people are not immunosuppressed, and when they are, it is nearly always the case that only some types of immune responses are dampened. When people hear “immunosuppression”, they usually think of two things: AIDS and immunosuppressive drugs. The immune dysfunctions seen in people with AIDS are complex, both because T-helper cells are top of the immune system chain of command and because the HIV virus has direct effects on cells other than T-helper cells. If you were to do a detailed analysis of a single patient, you would find that the numbers of some types of immune cells and cytokines are too low (T-helper cells, obviously), the numbers of other types of immune cells and cytokines are too high, and for some types of immune cells, the numbers aren’t depressed but the cells are dysfunctional. When it comes to immunosuppressive drugs, corticosteroids are “the sledgehammers” (because their mechanism of action is non-specific): even in this case, the ENTIRE immune system is not suppressed, those that are dampened are not dampened equally, and some immune cells actually tend to be more active than usual (neutrophil numbers are often high).
I may be making this point circuitously, but the point is that the immune system is complicated and dynamic, and unless you know precisely what immune function a drug or herb is meant to enhance, the chances are that (1) it won’t do any good; and (2) it may screw things up worse. Even when it is known how some herb alters the immune system, it can be very difficult to predict what the consequences of this may be (test tube studies on how some chemical affects immune cells can never really tell you what the consequences will be in a live person), much less whether such consequences will be helpful to you in managing your particular condition.
If a product were actually able to boost all types of immune activity, I would consider it pretty dangerous! If a product is able to increase an adaptive immune response, I would ask, “at what cost?” Different types of pathogens require different types of responses. Antibodies (secreted by B-cells) can be very helpful in neutralizing and eliminating many bacteria and some viruses, but they’re not particularly useful against HIV. Cytotoxic lymphocytes (CD8+ T-cells, “killer cells”) are great at controlling many intracellular pathogens, but are useless when it comes to extracellular bacteria like gonorrhea. Amping up one of these types of responses generally means suppressing the other, which may be the exact opposite of what you need. For both HIV-positive people and HIV-negative ones, I would be extraordinarily careful when it comes to messing with the immune system. The ideal immune system is NOT chronically activated; rather, the ideal immune system maintains homeostasis. I would be cautious about disturbing that homeostasis (which most people’s bodies maintain very well) unless you are targeting an intervention at a specific dysfunction and know how that intervention is supposed to work. On the other hand, for most healthy (or relatively healthy!) people, the immune system IS so good at maintaining homeostasis that most of the time, you will not cause long-term damage by a short-term course of immune boosters. Manipulating the immune system to produce intended results is not as easy as many imagine!
Back to HIV: in general, you do not want more immune activation. You particularly do not want non-specific immune activation. If you want your immune system to be as healthy as possible, the best things you can do are eat a nutritious diet, get enough sleep, and not over-indulge in alcohol, stimulants, or opiates (moderate alcohol use is OK. Methamphetamine and cocaine are pretty rough on the immune system and speed up HIV replication, but my view is that people have the right to put anything they want into their bodies so long as they are not harming others, and that using these substances on very rare occasions probably won’t cause long-lasting damage to most people. Opiates suppress certain aspects of immune function, but differ by degree. Morphine is the worst, Oxycontin and Dilaudid are the best, and heroin and probably most other opiates fall somewhere in between. Here I am more confident in saying that occasional use is probably OK. The studies on heroin generally involve addicts, so it is difficult to disentangle the effect of the drug from the effect of the lifestyle, which often involves malnutrition, unhygienic injection of impure drug, and regular use of other substances. Regular marijuana use appears to be fine, and plenty of AIDS patients find it to be helpful. Contrary to popular belief, poppers do not seem to damage the immune system, though they shouldn’t be mixed with v1agra). A vitamin/mineral supplement probably can’t hurt and may help, particularly those with poor diets (the studies on selenium thus far are suggestive rather than compelling, but I see no real argument against selenium supplementation. I would put NAC in the same category). Exercise is always a good thing. Of course, these are the same things that keep HIV-negative people healthy, and a healthy lifestyle is more difficult than popping a few supplements every morning. One thing I admire about many alternative health practitioners is that they are, in my view, far more effective than mainstream practitioners at inducing healthy lifestyle changes (notice that I said “many”, not “all”: some of the lifestyle changes promoted by some alternative practitioners are bizarre and/or more likely to be detrimental than beneficial to overall health, which makes it particularly impressive that they’re able to convince people to do it! The mainstream healthcare practitioners that I consider friends are profoundly pessimistic about their ability to induce patients to make lifestyle changes. There may be a self-selection factor involved, since people seek out alternative medicine because they are motivated to do something for their health and often have belief structures that are more conducive to the recommended behavioral changes, but it’s still impressive. That said, whenever a proprietor of an alternative product says that it will only work if lifestyle changes are made, I always wonder whether the reported results are coming from the behavioral changes rather than the product. Without rigorous evaluation, it is impossible to know).
Lastly, “immune booster” is not a precise term, and the products marketed with this claim are diverse. A lot of them probably don’t actually activate the immune system. When people believe that an alternative remedy is effective at preventing or treating infections, it is sometimes simply assumed that it must do so by boosting or supporting the immune system, and the “immune booster” label is slapped on it. Or perhaps “immune booster” is simply a label that sells products well.
(I have tried to make this answer non-technical and in many ways, the details are presented oversimplistically; if anyone craves more details or more technical explanations, I’m happy to give them)
If there is a specific herb or other product that claims to work by enhancing immune function, I would be happy to evaluate those claims and what they might mean for a person with HIV.
Question 8: "What about the idea that there is/are cofactor(s)involved in AIDS such as Mycoplasmas?"
Well, I guess it depends what you mean by “co-factors”. This word is sometimes used to mean other pathogens that are “necessary” cofactors (i.e. the theory that HIV on its own is not particularly harmful, and that it is only in the presence of some other, hitherto unknown germ that AIDS can develop). But people sometimes use the word co-factor simply to mean any factor that can negatively influence the course of HIV progression.
If you’re talking about NECESSARY co-factors, it’s highly unlikely that there’s anything to it (co-factors were Montagnier’s pet theory for a while, and to some extent still are, but even he has stated that HIV does not require any co-factors to cause AIDS). There are viruses that require co-factors - Hepatitis D would be an example of this, since it can only infect you and make you sick if you also have Hepatitis B. Denialists will claim that nobody has found any co-factors for AIDS because nobody has looked (i.e. everyone is too brainwashed by the orthodoxy of HIV=AIDS to think the etiological agent could be something else). This is yet another example of where they refused to do their homework before starting to spout their mouths off (I truly believe that for many of them, the goal is to spread misinformation, and that they rely on the fact that 98% of the public is not going to bother checking primary sources to see whether they’re telling the truth). Here are just a few of the studies done on the mycoplasma-as-cofactor theory:
http://www.ncbi.nlm.nih.gov/pubmed/8093918
lancet 1993: (No association between mycoplasma infection and disease stage, CD4 count, or viral load in HIV+ patients; no difference in the rate of mycoplasma colonization between HIV-negative and HIV-positive men;).
http://www.ncbi.nlm.nih.gov/pubmed/8784596
(looked for various mycoplasma species in HIV-negative and HIV-positive patients. Only one type of mycoplasma – M. fermentans – was found in any of the men, but it was found at a much higher rate in the HIV-negative ones)
http://www.ncbi.nlm.nih.gov/pubmed/7927818
(no mycoplasma found in the blood of any of a small cohort of HIV-positive men or HIV-negative controls)
As far whether they are factors that hasten disease progression, make transmission more likely, or lead to worse outcomes, the answer is ABSOFRICKINLUTELY! Moreover, there are about a gazillion of these things. For example, age is very clearly a “co-factor”. On average, people infected as infants progress very quickly, and older age is similarly correlated with worse outcome. People who were infected through blood transfusion often progressed much more quickly than people infected through sex or needles (this is most likely because they got a much larger dose of the virus). Some strains of the virus are more virulent than others. There are a bunch of known genetic factors that are correlated with slower or faster progression, and you can thank or curse your ancestors if you happen to have one of them. A variety of co-infections (hepatitis C, tuberculosis...) lead to higher mortality rates among the HIV-positive, but it appears that the effect of HIV on many illnesses is greater than vice versa (e.g. the effect of HIV on the severity of hepatitis B appears to be greater than the effect of Hepatitis B on HIV progression). The fact that people with HIV are better off if they’re not also teeming with other infections that can kill them should not be surprising to anyone. On the other hand, active Hepatitis G Virus (GBV) infection is correlated with slower progression, which was originally a bit of an enigma, but has since been clarified.
Again, it should not come as a surprise that people respond differently to a virus, and that some of this difference can be correlated with a variety of host factors. What has come as a surprise, to me at least, is the way some people will twist this fact into bizarre theories about HIV being harmless. Age is clearly a factor, with the very young and the old doing worse than young adults. But it’s patently absurd to say that AIDS is only able to kill someone if they are in the right age range (this always has been, and continues to be, an epidemic primarily of young adults). The same with the variety of other things claimed as necessary co-factors. The people who claim that AIDS can only kill someone if they’re already sick with something else and/or living an unhealthy lifestyle (which, in their view, includes all homosexuals!) just don’t seem to know enough people who have had AIDS and/or died of it. HIV is not a harmless virus, and it kills you without any 'co-factors'.
Duesberg was very nasty about this after one of his supporters died of AIDS (this man believed in Duesberg’s theory and was living a very clean lifestyle. Duesberg actually held him up as proof of HIV being harmless because this man had remained healthy for a number of years following his diagnosis), telling the public and the family that this man must have duped him and must have secretly been some sort of junkie (which there was no evidence for, but Duesberg doesn’t go from evidence to theory. His theory is set in stone, and he’ll twist any counter-example to make it fit).
People sometimes refer to HHV8 (Human Herpesvirus 8, the virus responsible for Kaposi's Sarcoma) as a "cofactor" for the development of KS in AIDS patients. This is a historical artifact, in my opinion. You don't get KS without the virus, but you also don't get toxoplasmosis (another opportunistic infection that people with AIDS get) without the T. gondii parasite. Same is true for any infectious disease, including the opportunistic ones - you can't get the infection without the agent that causes it! The opportunistic pathogen is the causal agent, not the 'co-factor', even if the pathogen only produces symptoms in the face of immunosuppression. The reason HHV8 is sometimes referred to as a "co-factor" is because people were looking for the "Kaposi's Sarcoma co-factor" once it became clear that only some patients with AIDS developed KS (before it was discovered that a virus caused KS, some thought it could be a lifestyle factor like poppers. Once it became known that it was just another virus, imo, the 'co-factor' label should have been dropped).
I’m having a chaotic day, and the next question (about the reliability of tests) is a particularly important one, so I don’t want to shortchange it. You’ve asked a lot of questions, and I’m trying to give reasonably complete answers, so please be patient with me! I promise I will get back to you as soon as I have another free hour that I can devote to the internet.
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