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Medical Forum / Diseases and Disorders / Lupus / July 2009Low Dose Naltrexone for Lupus?
Any comments, positive or negative? > Any comments, positive or negative? Quote following, taken from their website: "FDA-approved naltrexone, in a low dose, can boost the immune system - helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders." My comment: you don't seem to really understand lupus if you recommend this medication. To me? It sounds like a 'fancy' Echinacea..... so then, any comments, negative or positive? hugs, Shelagh http://members.shaw.ca/systemiclupus = Lupus Invisible In Plain Sight... lupus info for newly diagnosed patients and/or family and friends of such..... good luck to you all! I'll take that response as a "no, others have spoken well of it but I can't imagine why". And will note that in real life, I have seen that the body can be retrained. Oh, since I usually throw in a URL, here's one for consideration. http://www.antiaging-systems.com/a2z/naltrexone.htm > > Any comments, positive or negative? > [quoted text clipped - 14 lines] > lupus info for newly diagnosed patients and/or family and friends of > such..... good luck to you all! Forgot to mention-"wonderwoman" on the "LDN update" portion of the forum probably has some other information. http://ft003159.fusetalkcommunity.com/categories.cfm?catid=4 She has become aware of the vivid dream aspect that is common, she just started LDN a few days ago. And the price from the antiaging-systems folks is kinda high, unless you count in the convenience factor. > I'll take that response as a "no, others have spoken well of it > but I can't imagine why". And will note that in real life, I have [quoted text clipped - 24 lines] > > lupus info for newly diagnosed patients and/or family and friends of > > such..... good luck to you all! I love that comment Shelagh, that says "you don't seem to really understand lupus if you recommend this medication." But you are absolutely right. Why in the world would you take a product if you BOOST your immune system. Lupus is already boosting your system that is why you get sick. Why boost more? this makes no sense to me at all. I read your links and again it sounds like a wonder drug, and LOW doses are low doses. But why do people think if LOW is good in dosage, maybe I need a little more? haha. If it was approved by the FDA, then that still don't tell me it is a good drug to use, needs more work in my opinion. Now for years it has been shown that DHEA shows improvement in Lupus patients and the FDA still will not approve that. Stupid if you ask me, because I have been on DHEA, pharmacuetical grade ONLY, not over the counter stuff at a herb store. That kind is not pure. But it has shown benefits to most patients. I has lessened my fatigue immensely and most reading about it shows that people with Lupus have low testosterone, *(did a blood test came back NIL) and female hormones as well. Even Dr Wallace has mentioned that in his book. Well for me it works but FDA don't or won't believe that LOL. They have tried for years to get DHEA in a name called ASLERA approved but still no go and now they approve this naltrexone? Sorry makes no sense to me....... opps I think I got carried away again but seems I haven't had much to ramble about on here for awhile and thought I would wake some people up again hehe HI everyone, hope you are fine. janers You know that I don't know or care if you even consider it. But consider rethinking it. If your immune system is less than adequate, it will be less able to distinquish "self" from "not self". So if you manage to boost it, and it manages to make that distinction, instead of simply functioning with poor direction, it can be working for you instead of against you. > I love that comment Shelagh, that says "you don't seem to > really understand lupus if you recommend this [quoted text clipped - 3 lines] > Lupus is already boosting your system that is why you get > sick. Why boost more? this makes no sense to me at all. In message <3909a705-9b60-45d6-bfa0-9f886c6f2da8@o14g2000vbo.googlegroups.com>, >You know that I don't know or care if you even consider it. >But consider rethinking it. If your immune system is less [quoted text clipped - 3 lines] >poor direction, it can be working for you instead of against >you. Try a motoring analogy. My car's accelerator pedal is jammed down, so it is going unsafely fast. I should cure this by replacing its normal fuel with jet engine fuel.  SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> "Andy" <andy@kitzbuhel.demon.co.uk> wrote in message > Try a motoring analogy. My car's accelerator pedal is jammed down, so it > is going unsafely fast. I should cure this by replacing its normal fuel > with jet engine fuel. There you go Michael.... it sometimes takes a man to connect with another man.... <g> the 'motor car' analogy is just perfect IMO... way to go Andy... you may have gotten through to him; I fear I did NOT! Thanks again for your back up though janers <lol>.... hugs, Shelagh "Michael B" <baughfam@bellsouth.net> wrote in message: <quote> But consider rethinking it. If your immune system is less than adequate, it will be less able to distinquish "self" from "not self"....... </quote> okey dokey then...... (???? that line didn't even make sense, I am sorry but you need to reconsider what you are writing, before sending... perhaps naltrexone would help your brain cells, boosting them into working correctly?!) Michael, that is just 'it' ... our immune systems are NOT 'less than adequate', as you so eloquently put it.... they are in fact, 'overly adequate' ... enough for 2 or 3 humans per lupus immune system... they are way over active, over boosted and over working and so they fight our own bodies, completely .... they are in fact, essentially the 'opposite' of how HIV works with the immune system, tearing it down, breaking it up and setting it low, very very low..... We can't take Echinacea and if we did 'reconsider' and take your recommendation of Naltrexone... we would become very sick, very quickly; some of us would be hospitalized and some sent into major flares needing high doses of toxic meds like prednisone.... and the cancer fighting immunosuppressives. So then, why on earth don't you just go and read about the workings of lupus before you come in just to be a 'disturber' ?! Do you actually know anyone with lupus, or have anyone close to you with it? Or are you sick with it yourself? Any of the above and I may go easier on you.... if you actually 'saw' some improvement on a systemic lupus patient...on this Naltrexone I would be 'gob smacked'... totally!! http://members.shaw.ca/systemiclupus You could possible begin with the above link.. it has the basics for newly diagnosed patients and/or family and friends. It will tell you how it works and what to 'avoid' although janers did a very good job of that with what she said....<g> c'mon everyone!!!! WAKEY WAKEY ..... jump in and help to either defend or argue the naltrexone stance taken by 'Michael B' vs. Janers and myself !! ~Shelagh Actually, I don't see this as a "me against you" thing. That's why I initiated my post with the (deleted) comment that I didn't really know or care whether you considered it or not. And still don't. It's not as though I have anything to gain if you were to go with it. And I'm not going to try to change your mind. I would prefer to let you stay comfortably where you are, rather than get annoyed by this "outsider" coming in and 'telling you what to do'. We get enough of that from Ironjustice and others, generally being unable to answer simple questions. But I do assure you of one thing. I do not have Lupus. Yes, I do know some that do. Including several with SLE and fibromyalgia. You see, I train couples with fibromyalgia how to give and receive safe and effective massage for the FMS. It's not like I'm unaware. And well attuned to the pathophysiology, to the extent of current awareness. And there are several specific issues with SLE that have to be taken into consideration when dealing with a person that also has fibromyalgia. And the "Mask of Lupus" is not always there, in fact it's more likely not present. I may well know aspects of SLE that you are unfamiliar with, but it's not like I'm going to try to change that. But anyway, I recently posted, reminding that on the Lupus forum, the person with e-mail name of Wonderwoman was just beginning the protocol, suggesting that you ask her why she would have considered doing the LDN when others were "sure" that it was the wrong thing to do. Am I going to give you a bunch of URL's to support my "position"? Nope, even though I could. Am I going to argue with you, or criticise inadequate analogies? Nope, even though I could. Am I going to recount how I have seen the very clear evidence of how it has helped with autoimmune conditions? Nope, even though I could. Am I going to give you a very descriptive website with a person telling how she was amazed at how it had helped her? Nope, even though I could. Am I going to recount all the clinical trials that have verified how effective the low-dose Naltrexone protocol is? Nope, because generally speaking, they don't exist. Only some stuff showing how effective it was for fibromyalgia, another with a patent on it for prostate cancer, some other stuff you probably wouldn't be interested in anyway. Speaking of prostate cancer, there is speculation in anecdotal literature that the body has cancer tissues cropping up regularly, but the body recognises them as "non-self" and responds against them, in the properly functioning immune system. And that the LDN protocol may well modulate the immune processes to help the body more appropriately deal with such things. Speaking of "such things", if you consider looking into it, be sure to glance at how LDN helps with Crohn's, or Multiple Sclerosis. Conditions not the same as SLE, but autoimmune conditions that typically involve some really nasty meds. Would I be telling you about seeing clear evidence IN REAL LIFE of both of them being dealt with in a very positive fashion? Nope, even though I could. So, no, I'm not interested in arguing with you or Janers, or anybody else for that matter. My three rules for engagement are to know the rules, know the participants, and intend to win. This is not a situation in which I see it as a "win or lose" issue for myself. I'm not the one with SLE, RSD, MS, RA, CA, FMS, or any of the other alphabet combos with an immunity issue. If you feel the need to communicate additionally with me, I'm in the fibromyalgia or chronic pain newsgroups, but before I leave, I'll leave you with something to consider about LDN for MS. http://www.lowdosenaltrexone.org/ldn_and_ai.htm I'm not saying that a word of it is true, just something to read. But I could tell stories from real life attesting to the truth in it. All I did was ask that you reconsider how you view Lupus. Up to you whether you do that, it makes no difference to me in my life whether you do it or not. Have a good day. > "Michael B" <baugh...@bellsouth.net> wrote in message: > [quoted text clipped - 43 lines] > the naltrexone stance taken by 'Michael B' vs. Janers and myself !! > ~Shelagh "Michael B" <baughfam@bellsouth.net> wrote in message: <my quote> a lot of babble I cut out, sorry </my quote> .......... :^p.... Andy your analogy went straight over his head.... like anything else being said here that doesn't back his stance.... <sigh> alrighty then, really all that is left to do, for my last words on this subject, will be to return to my initial comment once again, and reiterate that: IMO 'you really do need to better inform yourself on the workings of systemic lupus and the immune system ramifications involved, especially when making suggestions of/or introducing medications to the scenario.... medications that directly 'boost' or alter the implicated immune system in any way at all ..... JMO FWIW.... and a good day to you too! ~Shelagh I do indeed appreciate your candor. And I sorta apologize for not presenting more to 'bolster my stance', and I see from your response that it was just as well. And for your peace of mind, I think it would be a good idea to operate on the assumption that everyone saying that it has helped them needs to be seen as a liar, and that the way you view it is indeed the appropriate one. So stay out of the LFA, you might see some of those liars. http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=3164 After all, what kind of person, other than a liar, would come up with a screen name like "Lernie"? So you can safely ignore what he says, too. Because he claims that it helped, and that couldn't possibly be. Could it? > 'you really do need to better inform yourself on the workings of systemic > lupus and the immune system ramifications involved, especially when [quoted text clipped - 5 lines] > and a good day to you too! > ~Shelagh "Am I going to recount all the clinical trials that have verified how effective the low-dose Naltrexone protocol is? Nope, because generally speaking, they don't exist" I believe Michael B's quote un quote above says it all. THEY Don't exist!! enough said You asked our opinion and we gave it and explained why too. We live this diease every day, don't you honestly think we have been to doctors all kinds for help of one kind or another? Don't you think we are looking for that miracle drug? Tis true no lupus drug has been found to help us in over 50 yrs did you know that? so some are helped by one thing and others by another. But that does not mean we would go try a drug that boost our immune system and puts our body in a turmoil by "putting pedal to the metal" in that kind of way . YOU got to be serious here. We said no now why not drop this, because when you live this daily you know what you deal with and most who don't have no idea what we go through. Having a good day too thank you any way janers Isn't the internet neat? No longer do you knock on the door, and if you are sent away the people inside miss knowing about the brushes, the encyclopedias, or this nifty gadget that makes housework easier. In spite of three or four responses, I know that others have been watching the conversation, because I have gotten two emails asking for assistance in getting the medication. And in both, the answer has been "no". They need to do the research, find the doctor that will prescribe it, etc. instead of taking my word that it helps instead of throwing a system into turmoil. "We said no now why not drop this, because when you live this daily you know what you deal with and most who don't have no idea what we go through." A common notion, having been seen often in the FMS area. An area, by the way, in which recent clinical trials showed an excellent response for many fibromyalgia patients. And some MS patients have even paid $25,000 to be in a study. For those who are willing to do what I suggested at the outset- Reconsider the path you are on. Consider the autoimmune response as an inadequate and misdirected response, rather than a system in overdrive. And then it makes sense that people with SLE, including some on the Lupus Forum, would be recounting how it has helped them. It would make sense that there are doctors that have seen that it works and would prescribe it. It's not a matter of "boosting the immune system". it's a matter of stopping it in its course, giving it proper directions, and sending it to do its job in the appropriate fashion. Two weeks ago, a person with MS was driving because of the LDN, a YEAR ago, a person with previously crippling rheumatoid arthritis was telling me how his folic acid container reminded him of the side effects of methotrexate. Does it sound almost like a religious endevour on my part? Yeah, kinda. Do I need to save everyone from the evils of a system that's gone haywire? No, not really. But do I feel the need to at least show the path that has given people back their life? Yep. So the invitation is still out there. Reconsider your notions of how the immune system works. 90% of the receptors are for the opiods. Revia was such a flop, and endorphans were discovered. Wouldn't it be nice to not only feel better physically, but mentally as well? That is the very possible outcome of taking the path I've suggested. But don't contact me. Go to the Lupus Forum and ask the questions of people with Lupus that are already doing it. Or go to some of the other forums, such as the Yahoo group for LDN, currently with over 6,000 registered accounts. They say that one fact shoots the hell out of a lot of theory. The theory is that your immune system is going too fast already, and a person would be wrong to make it go faster. But the FACTS support the notion that your immune system is lacking proper direction, and needs to be reset with better instructions and "self" identification. Wouldn't you like to be able to say that Lupus, although still there, was no longer a problem? That's almost exactly what the person with multiple sclerosis was saying, as she got into the car on her own, having previously been limited from driving because of vision and mobility issues. "Miracle drug"?. Not so. Just better living through chemistry. > Tis true no lupus drug has been found to help us in over 50 yrs did you know that? so some are helped by one thing and > others by another. But that does not mean we would go try a drug that boost our immune system and puts our body in a turmoil [quoted text clipped - 5 lines] > thank you any way > janers > Am I going to give you a bunch of URL's to support my "position"? > Nope, even though I could. {bunch of other stuff snipped.} If you refuse to lead us to any documentation you are acting like a troll. Using Google Groups to post to a newsgroup does not help your position. If it looks like a troll and act like a troll . . . We in this group have had to put up with many over the years and you will find us "gunshy" maybe to the extreme. SignatureTimothy Not impressed with the characterization. I have directed to portions within the LFA, including specific names of posters within it, who have apparently done enough research to decide to do it, including one reporting on several years experience I'm not going to see any value in selectively delivering URL's. That is something a person interested in doing the research would need to do. In spite of my having given a couple of URL's that were promptly deleted. How to do the research? I would suggest that the first term be "low dose naltrexone", second term as "lupus". You're not dealing with Ironjustice here. Do the research or don't, I'll never know. But others have done it, and been helped. Or maybe all of them lied. Could be. Maybe when they said it had been like a miracle, they were lying for the pure sport of it. Could be. Could be that an autoimmune condition involves too little, rather than too much immune system recognition of "self". But then, that was being noted on the since-deleted URL about "LDN and autoimmune conditions", such as MS. And the fact that I post from Google Groups is irrelevant. There's gonna be a lot more posting through Google, AT&T stops carrying newsgroups in July. > > Am I going to give you a bunch of URL's to support my "position"? > > Nope, even though I could. [quoted text clipped - 10 lines] > -- > Timothy > Not impressed with the characterization. > I have directed to portions within the LFA, including [quoted text clipped - 19 lines] > But then, that was being noted on the since-deleted URL > about "LDN and autoimmune conditions", such as MS. There's no clinical trials for this product and MS, nor Lupus. http://clinicaltrials.gov/ct2/results?term=Vivitrol+ There are 2 IIRC for crohn's - which I think are autoimmune - I haven't read the criteria and goal and when trial results are expected.. Check it on their newsgroup. or at http://clinicaltrials.gov/ The other (clinical trials) are for alcohol or drug addiction. Here's clinical trials for Lups http://www.centerwatch.com/clinical-trials/listings/studylist.aspx?CatID=384 and Naltrexone aka Vivitroll. Naltrexone (marketed as Vivitrol) Naltrexone is indicated for the treatment of alcohol dependence in patients who are able to abstain from alcohol in an outpatient setting prior to initiation of treatment. from:< http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsan dProviders/ucm103334.htm FDA webpage There's no mention of it under Treatments nor New Research at http://www.lupus.org/ Yes, there are liars on forums; don't tell the truth about their diagnoses and/or have a financial interest in promoting unproven products and/or lie to themselves (ie placebo effect). The only way to know if it's safe and effective is the process called clinical trials. Phase I and II for safety and dose escalation/modification and then larger cohort, multi-centre-multicountry (longer term) clinicals trials. Which exclude bias but ensure consistency of the patient cohort. If there's a doctor whose trialled it in a small population (ie Phase 0) (of Lupus patients) and it worked well for one or more Lupus problems, let him or her get it into trials. A medicine typically takes about 10 years of trials before knowing whether it''s helpful and with which patients. Since there's 1000 faces of Lupus, and like many MS'sers symptoms wax and wane (flareups, then periods of feeling better), I would expect a longer trial would be needed unless there was an overwheliming "thumbs up" in 99% of the patient cohort. Chronic fatigue (which was in another post here, of yours) and fibromyalgia are not autoimmune, but conditions can co-exist with one or another of an autoimmune illness. You're not getting info from good sources, Michael. Stick to what you know, massage therapy. J A clarification for you. Vivitrol is a 50Mg version of Naltrexone. The item being discussed is low dose Naltrexone, 3-4.5 mg. > > Not impressed with the characterization. > > I have directed to portions within the LFA, including [quoted text clipped - 33 lines] > alcohol dependence in patients who are able to abstain from alcohol in an > outpatient setting prior to initiation of treatment. > You're not getting info from good sources, Michael. > Stick to what you know, massage therapy. > J I spoke wrong this time. Vivitrol is the extended release form of NTX. > A clarification for you. > Vivitrol is a 50Mg version of Naltrexone. [quoted text clipped - 40 lines] > > Stick to what you know, massage therapy. > > J I spoke wrong this time. Vivitrol is the extended release form of NTX. -------------------------------- As 'J' had previously remarked, you really should just 'stick to what you know'.... IF you know anything at all..... medically speaking that is. You very obviously, simply have not done your homework on 'what is lupus' or 'how does lupus affect the immune system'.... or 'what meds should lupus patients avoid' .... ETC....!! ~Shelagh http://members.shaw.ca/systemiclupus Amen Amen Amen enough is enough huh Shelagh > Amen Amen Amen > > enough is enough huh Shelagh OMG yes, enough said already!! He really is NOT hearing us, any of us... and has nothing to back his stance... not even the links he sent; it is all just so irrelevant and not applicable to lupus... but he can't seem to absorb that thought... or concept... I don't know why he is attempting to push it down our throats, but I for one have really had enough of his drivel.... or is that 'dribble' <g>..... and he talks in riddles, saying nothing with a lot of round and round stuff.... honestly he made my head hurt; implying that I called people liars and that I deleted his links and blew off his proof... what proof? and you can't delete original posts.. they are all still 'there' for anyone wanting them lol... omg, it takes all kinds! Me? I have enough on my plate already! him I don't need! thanks for backing me janers lol... I was alone there and wondering where our group had gone... TTY soon, hugs, Shelagh This has been refreshing! Nothing like a little spat to wake up the troops. :>) I check out this group often so finding anything posted (except IJ) is welcomed. Thanks to all of you. George >This has been refreshing! Nothing like a little spat to wake up the >troops. :>) OK, here's my current need2know. What's people's favorite recipe for hungarian gulyas (goulash)? (What has this to do with lupus? Nothing, except that even lupies have to eat...) SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> I know Michael Baugh. He is a housing inspector for Metro Louisville Kentucky. He is not a doctor. In my opinion he does not know what he is talking about and will get someone hurt or worse taking his pseudo medical advice! Beware! Suggest you search the web for his name and Metro Louisville and just see what you find, it will open your eyes! Motherhen >I spoke wrong this time. >Vivitrol is the extended release form of NTX. [quoted text clipped - 9 lines] >~Shelagh >http://members.shaw.ca/systemiclupus >> Not impressed with the characterization. >> I have directed to portions within the LFA, including [quoted text clipped - 19 lines] >> But then, that was being noted on the since-deleted URL >> about "LDN and autoimmune conditions", such as MS. while i have not seen any thing close to clear or conclusive information on this subject, i have read several studies that have shown low beta-endorphins in RA, lupus, and MS folk - so, 'if' ldn, in the very low doses, does turn out to bring these back to somewhere near a normal level, then it just might be true that our immune systems get 're'-modulated back towards something like normal. big 'if' - and only tests/trials will bear it out either way. > There's no clinical trials for this product and MS, nor Lupus. > http://clinicaltrials.gov/ct2/results?term=Vivitrol+ > There are 2 IIRC for crohn's - http://www.clinicaltrials.gov/ct2/show/NCT00715117?term=crohns+smith&rank=2 which I think are autoimmune - I haven't read the > criteria and goal and when trial results are expected.. The results of a successful open-label pilot study at Pennsylvania State University College of Medicine were reported to an international gastroenterology conference in Los Angeles in May 2006. The trial demonstrated the safety and efficacy of LDN in a group of patients with Crohn's disease, thought of as an autoimmune disorder by many Drs. Dr. Jill Smith, Professor of Gastroenterology at Pennsylvania State University's College of Medicine, found that two-thirds of the patients in her pilot study went into remission and fully 89% of the group responded to treatment to some degree. She concluded that "LDN therapy appears effective and safe in subjects with active Crohn’s disease."[1] Smith and her colleagues have since received a substantial NIH grant and are proceeding with a definitive Phase II placebo-controlled clinical trial. [reported in the January 11, 2007 edition of the American Journal of Gastroenterology (2007;102:1–9)] Study Protocol Participants will have a complete physical, blood work taken, keep symptom diaries, complete questionnaires and continue with follow-up for 4 months. Cost of medication, office visits, and blood work are paid by the study. This research has been approved by the Institutional Review Board, under FDA regulations, at Penn State's College of Medicine. Interested patients contact Sandra Bingaman, R.N. at 717-531-8108. J.S. Hong, Ph.D., head of the Neuropharmacology Section of the Laboratory of Pharmacology and Chemistry at the National Institute of Environmental Health Sciences, finds that "morphinan" drugs, including naltrexone and naloxone, are able to reduce inflammatory reactions in microglia brain cells in animal studies. Such inflammation is believed to be central to the progressive neurodegenerative effects seen in disorders such as Parkinson’s disease and Alzheimer’s disease. Hong’s report, summarizing the role of microglia in inflammation-related neurodegeneration and the potential of therapy using morphinans, appears in a January 2007 issue of Nature Reviews Neuroscience [8(1):57-69]. A multi-institutional clinical trial of LDN for MS has begun in Italy. Milan neurological researcher, Dr. Maira Gironi. Several northern Italian hospitals began enrolling patients for the study during the first week of December, 2006. Dr. Gironi anticipates that the 6 months of LDN treatment will have been completed by early summer 2007. A study of LDN in the treatment of MS at the University of California, San Francisco, was implemented in early 2007. The National MS Society has awarded a small grant for a study at Penn State of naltrexone for an animal model of a disease that mimics MS. results from these should be showing up within the year. until then, i remain wary of too much enthusiasm - i'd rather stay skeptical, than be disappointed. > Check it on their newsgroup. or at http://clinicaltrials.gov/ > The other (clinical trials) are for alcohol or drug addiction. [quoted text clipped - 37 lines] > Stick to what you know, massage therapy. > J > And the fact that I post from Google Groups is irrelevant. > There's gonna be a lot more posting through Google, AT&T > stops carrying newsgroups in July. Other ways to access newsgroups Various plans at Giganews http://www.giganews.com/usenet_offers/free_newsgroups.html Individual.net http://news.individual.net/overview.php http://motzarella.org/ Free - Cannot use Bellsouth nor AT&T mail addresses for registration http://aioe.org/ Free - I haven't used it lately, so cannot spreak to how reliable it is. Astraweb. http://www.news.astraweb.com/ $10 one-time fee for 25GB. Excellent support of their product. Good retention. Their Knowledgebase explains how to set up newsreaders and more |
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