starryeyes
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I'm still praying for you hanchuchu and now I have tears in my eyes too. I pray you find something that helps you. I'll keep watching this thread.
Hugs,
tee
Hugs,
tee
emergency report from China
- Thread starter hanchuchu
- Start date
Thanks. I think only you guys can understand our feelings now--fighting horrible unkown virus. Many infected, including myself, just don't believe it is HIV mutation because it attacks and spreads differently. Possibly this will bring us hope. If we find out the virus, there may be a cure. It is chronic and won't quickly kill. But we do suffer a lot. "to be or not to be" is the question I ask myself again and again everday. I need peace. when I feel too bad, I just want to kill myself. I just cannot imagine the life without purpose and dignity. Life is falling apart actually.
I just pray Charels can have the chance to help us...
K
_Kim_
Guest
hanchuchu, your purpose right now is clear to me. You are helping the thousands of sufferers who are too sick to find help for themselves. You are the voice for all of those who don't speak or write English well enough to let the world know about your plight. You are the one who was guided to this forum by your intuition, the one who has risked his own safety in order to get help. And it is you who has followed up with every single lead that everyone on this thread has suggested. I have no idea how you found us or why you thought we might be able to help. I believe that God is working through you to bring you the answers that you seek.
There is great dignity in the kind of advocacy you are doing. I have been inspired to help, not because of your suffering, but because of your courage.
I wish you peace today,
Kim
many good vendors of OLE and Oregano Oil
Thanks Hanchuchu for the TCM information, I will look at that. I translated it with Babelfish and recognize a few of the words, like Atragalus and licorice.
There are many good vendors for Olive Leaf Extracts and Oregano Oils. I have tried many OLE brands and all have been good. Both the liquid extract and the powdered form in capsule.
There are some very good Oregano products, such as Oreganol and Oregamax. I have used them and those two can kill many different types of pathogens.
I do not recognize that AIDS drug you mention, it translates as 'Tang Caopian'. Are they using Anti-AIDS drugs???? Some of those are probably safe but some are very dangerous, I hope they are being careful and aware of the side-effects. I have read that one of the worst is AZT, which was rejected as an anti-Cancer drug initially because it damages the bone marrow, stops cellular reproduction, and if it is taken long enough can cause death. I would never take that drug, particularly if I were sick...
That is interesting that you mention Spleen. I was told once by an energy healer using a type of acupressure that I had spleen energy problems, and I often get sensations there. So I studied and found that there are several common diseases of spleen that damages or destroys red blood cells. That could make sense that spleen problems are part of CFS, and maybe your illness in China also.
--Kurt
Thanks Hanchuchu for the TCM information, I will look at that. I translated it with Babelfish and recognize a few of the words, like Atragalus and licorice.
There are many good vendors for Olive Leaf Extracts and Oregano Oils. I have tried many OLE brands and all have been good. Both the liquid extract and the powdered form in capsule.
There are some very good Oregano products, such as Oreganol and Oregamax. I have used them and those two can kill many different types of pathogens.
I do not recognize that AIDS drug you mention, it translates as 'Tang Caopian'. Are they using Anti-AIDS drugs???? Some of those are probably safe but some are very dangerous, I hope they are being careful and aware of the side-effects. I have read that one of the worst is AZT, which was rejected as an anti-Cancer drug initially because it damages the bone marrow, stops cellular reproduction, and if it is taken long enough can cause death. I would never take that drug, particularly if I were sick...
That is interesting that you mention Spleen. I was told once by an energy healer using a type of acupressure that I had spleen energy problems, and I often get sensations there. So I studied and found that there are several common diseases of spleen that damages or destroys red blood cells. That could make sense that spleen problems are part of CFS, and maybe your illness in China also.
--Kurt
Kurt, can you just put the names of the producer of LOE and Oregano for me-the most publicly available brand at the best? So I can ask my friends to buy them for me.
"Tangcaopian" is safe, because it is the pure extracts from herbs. http://www.naturalherb.com.cn/product_detail.asp?id=153
Energy healer? I believe it is the way of needle-heal in China. The healer will insert needles in specific points in your body, right? It is also traditional chinese method. I am taking TCM boosting the function of spleen as well.
Thanks for the Tangcaopian link.
I am using some energy healing also, a type of acupressure for the feet (Reflexology), it gives me an energy boost for awhile after a session.
Here are some good links for those oregano products:
Oreganol products from Vitamin Shop (best price) - any of these are good, I use the oil in water but some people can not tolerate that and must use the capsules.
Oregamax, also from VS - this stuff is POWERFUL, stronger than many pharmaceutical antibiotics in my experience. Good for acute infections, I have to take several capsules (2-3) each day for a really bad infection like bronchitis. I have read of people taking 5-6 capsules but would not try that with CFS due to poor detox, but maybe the China illness requires stronger doses like that.
subsequent report from PRC new agency--the last crazy moment
http://gcontent.nddaily.com/d/fb/dfb84a11f431c624/Blog/e98/ac533f.html
http://news.southcn.com/c/2009-12/02/content_6709389.htm
http://news.qq.com/a/20091202/001250.htm
国家疾控中心已成立课题研究组，但这个特殊人群的大多数仍生活在病痛与恐惧中末路疯狂：阴性感染者的深渊类别：深度调查 作者：鲍小东 原创 浏览量：0 发布时间：2009-12-02 手机看新闻
版次：AT04 版名：深度周刊 重磅 稿源：南方都市报 摘要：所谓扎阳，是指阴性感染者用针头在艾滋病人身上扎针，然后再回扎自己，或直接与艾滋病人性交，使自己变成真正的艾滋病人，以此获得治疗。
末路是个富人，她和老公各拥有几套房产。但现在的她每天只想三件事情：自杀、救家人、报复别人。
老公问她，你真的不再管我了吗？她说，你找(小姐)越多越好，传染得越多越好，我们各自传染给别人吧
所谓扎阳，是指阴性感染者用针头在艾滋病人身上扎针，然后再回扎自己，或直接与艾滋病人性交，使自己变成真正的艾滋病人，以此获得治疗。
尽管目前国家非常重视，但还是未恢复这个漂亮女人的生活信心，她仍要继续用性传播她的疾病。
她认为自己得了艾滋病，但多次HIV抗体检测结果均为阴性，她又认为自己得了艾滋病变异病毒。她给自己取了一个消极的网名叫末路。
在中国，有大量类似人群，他们在网上聚集，自称为阴性感染者。但专家认为，他们只是恐艾。
通过长达三个月的调查，中国疾病预防控制中心(以下简称CDC)成立了疑似艾滋病课题研究组，10月30日，这个课题研究组始在全国招募60名病人分批进京，参加研究。
虽有不少病人积极响应，但更多病人像末路一样，对这次研究并不乐观。
研究课题组计划委托国家CDC最权威的实验室对他们是否感染艾滋病病毒作出决定性的复测，并联系在京的临床专家，对这些病人共同进行临床检查，并提出诊疗意见。
但病人们认为，他们得的是未知病毒，或者艾滋病变异，而研究课题组只是排除已知病症，因此没有意义。
我没有申请去北京，因为没有意义。末路说，国家只有研究和治疗同时进行，才能减少病人痛苦，才能减少病人报复社会，并减少更多人被感染。
艾滋症状，但检测总是阴性
末路称，她已经报复性地传染了3个男人，都是通过性进行传播的。
即使现在，末路仍是一个漂亮女人，如果不扬起脖子，没人会看到她的脖子上一块块明显的淋巴结，她的皮肤粗糙。而发病前，她更加漂亮，皮肤光滑、白皙，没有皮疹，脸上没有斑点，不少男人以为她还未结婚生子，并追求她，但在发病前，她性观念保守，除了老公，她没有接受过别的男人。
她的病是老公染回家的。
她家在广州。只要不出差，老公每晚都回家吃饭，但他经常出差。5年前，老公一次出差了2个月，回来后咳嗽不止，吃药、打吊针都不见效。她和老公发生性关系后两个星期，也出现了很多症状，如皮疹、肌肉跳动、淋巴结肿大等等，体重一下子减轻了七八斤，老公体重也减少了十斤。
他们进行H IV抗体检测和治疗，结果都是阴性，病情也不见好转。一年多后，很多症状自行消失了，这个拥有大学学历的女人以为这是拜神的结果。
但3个月前，各种症状又开始重新回来了。
老公承认，他在外面找了小姐。但他认为，他们只是感染了未知病毒，而她认为，他们感染的是艾滋病变异病毒，因为症状和艾滋病完全一致。
武汉的桂希恩，北京的李太生、吴焱，广州的蔡卫平，杭州的时代强等人都是国内艾滋病临床领域知名专家，每年有很多病人从全国各地慕名找到他们，或者打电话向他们咨询。他们在接受本报记者采访时称，他们所在的医院每年都会接待数千名这种病人，他们认为，虽然不排除一部分人感染了未知病毒，但大多数人都是恐艾。
而性，起到了至关重要的作用，因为这些病人大多数都有不洁性行为。上海社会科学院艾滋病社会政策研究中心主任夏国美称，如果病人本身没有高危行为，恐惧是可以很快消除的。
全家中招，哥哥死了
11月30日，末路从包里掏出侄女的照片，出示给记者。照片上的小女孩腿细如柴，下巴尖尖，表情抑郁。
她家很有钱，她身上的一件衣服都是五六百元钱。末路说。但是小女孩也感染了这个病毒。
在长达三四年的潜伏期里，虽然还有疲劳、咳嗽等少数症状，但末路以为自己没有感染艾滋病，而且医生们骂她神经病，有心理问题。于是，她和家人如常生活着。
她和母亲经常一起吃饭，她还常常抱着侄女，而除了母亲和侄女外，她发现其他所有家庭成员也都感染了相同的病毒，包括父亲、两个哥哥和嫂子们。
去年，她的一个哥哥去世了。他长得很帅，又十分富有，经常开着宝马抠女，他不喜欢找小姐，因为太脏了。
3个月前，潜伏期过去了，很多病症回到末路的身体，她发现身体肌肉萎缩，出现大量皮疹，腹泻严重等等。这时，她回想哥哥去世前的情景，她又开始怀疑自己得了艾滋病，而且是她把病传染给了哥哥。他也是肌肉萎缩，死前，手臂只有我现在的二分之一粗。
据其回忆，她哥哥早期症状和她当初完全一致，咳嗽非常严重，感染三年后，死于肺癌。
对于专家们 的 恐 艾说，末路质问：如果只是恐艾，怎么会有这么多症状，而且如此传染呢？
很多 病人 都有着与末路相 似 的经历：多次检测被排除艾滋病，医生们认为他们是恐艾，建议他们与家人正常生活，解除碗筷分开、不过夫妻生活等等隔离式生活。结果是全家中招。
这是他们痛恨医生和恐艾说的原因。
他们认为，唾液都可以传染该病。所以你不要以为只有小姐才有这样的病，也许，你身边的某个人就有这样的病。末路说。
深圳网友面对称，他的公司有十几个人都被他传染了，因为他是搞采购的，饭局很多。他认为是通过聚餐传播的。
病情复发以来的3个月，末路痛苦不堪。她周身疼痛，在医院里，她想跳楼自杀，但她住在二楼病房，如果跳下来，不但不会死，还会残疾，因此她没跳。
现在，她加入了一个自杀群，在Q Q群里，这些得了绝症的人们探讨着各种自杀方式，有的人相约一起自杀。
没有奇迹经常打电话哭着问我，会不会自杀，我说，会啊，但是等我的孩子长大点，或者我带着他一起自杀。末路说。
她的孩子已经4岁了，由保姆带着，她说，孩子和保姆都被感染了。为了减少痛苦，她尽量少和孩子呆在一起。她甚至和老公挑明，她不想再管孩子了。
进京和扎阳
7月份，曾光的出现曾一度让他们获得些许希望。
曾光是国家C D C流行病学首席科学家、博士生导师，W H O传染病监测和应急反应科学委员会委员，中国现场流行病学培训项目执行主任，国务院特殊津贴获得者。
曾光认为，这是需要认真调查解决的公共卫生问题。他安排自己的助手展开了长达三个月的调查。
10月30日，疑似艾滋病课题研究组从中国疾病预防控制中心性病艾滋病预防控制中心获得经费支持，开始在全国招募60名病人分期参加研究。一切用于研究目的的检测费用由课题组承担。个人的差旅费由病人自费承担，如对差旅费支付确有困难者，也可以提出资助申请。
课题组将委托国家CDC最权威的实验室对病人是否感染艾滋病病毒作出决定性的复测，并组织国内权威的临床、医疗以及科学研究的专家，共同组成专家组，对病人共同进行临床检查，并提出诊疗意见。
在知情同意的前提下，课题组将匿名公布一部分病人的资料、医生的诊断意见和课题组建议，供那些未参加的病友们参考，共享研究的成果。课题组招募病人时强调申请者要有热心为群体服务的意愿和决心，在自己症状好转后会通过网络帮助他人。
曾光在最近的一封公开信中表示：虽然解决你们所反映的问题不是我本人职能分工内的工作，我们的精力和能力也很有限，但为了能对你们提供帮助，我们还是自愿开展了这项工作。我们的参与是短暂的、启动性质的，主要是为了探索解决问题的可能性和有效途径，从而向有关部门反映你们的情况，并对可持续性地应对你们所反映的问题提供建议。
我们会将群体情况向国家反映，以争取更多的人对这个群体进行关注及开展研究。公开信称。
但和末路一样，很多病人对此研究不表乐观。因为他们认为自己感染了未知病毒或者艾滋病的变异病毒。而课题组排除的只是已知病毒。
之前的10月14日，本报刊发了1.5万字的关于阴性感染者的调查报道，10月20日，12名来自全国各地的心急病人，自发前往北京。国家CD C相关部门热情接待了他们，并及时动用国内最先进的技术，同时使用多种方法，对他们进行了H IV病毒、丙肝、梅毒、免疫值等项目进行检测，结果发现他们均无问题。
一位进京的病人透露，检测结果出来后，曾光曾私下表示，他们感染的并非同一种病毒，问题比较复杂，但肯定不是艾滋病。
尽管如此，病人们仍然认为，排除艾滋病的结论未必正确，因为身体的症状不得不促使你往这(艾滋病)上面想。
末路开始吃拉米夫定、唐草片等治疗艾滋病的药物，她发现，病情得到控制，浑身不再那么痛了。她的妈妈和她一起吃相同的药，结果病情也得到控制。
现在，她每月要花1000多元钱，从上海邮购这些药物。老公因为不相信得了艾滋病，自己另外找药吃。
我知道在Q Q群里，像我这样的有钱人只有几个，大多数人经济都很困难，他们打一份工，工资一两千元，根本吃不起这药。所以，他们想去扎阳。末路说。
所谓扎阳，是指阴性感染者，用针头在艾滋病人身上扎针，然后再扎在自己身上，有人直接与艾滋病人性交，使自己变成真正的艾滋病人，以此获得国家免费的艾滋病治疗药物。他们通过Q Q群寻找艾滋病人。
只想着自杀和报复
末路是个富人。她和老公各自经济独立。老公拥有3套房子，她自己在广州等地也有三四套房子，每套房子都值百万元，并拥有私家车。她还有一家工厂，数十名工人。硕士毕业的老公另有职业。
以前，她早上8点到工厂，晚上6点回家，加班时，夜里11点才回家，每天看到账本上有收入，就很开心。
但是现在她每天睡到中午12点才起床，每天去工厂随便处理一下问题就回家睡觉，工人们打电话向她反映问题，她让他们自己解决。工厂快亏本了。她投入股市的100多万元钱，只剩下30万元，她现在连看都懒得看了。
现在我就希望面前是一张床，可以躺上去睡觉。11月30日午后末路说。
对于改变了整个家庭命运的老公，她已经不再怨恨了，加入Q Q群后，发现很多人都得了这个病，那么我即使现在不得，将来也会得这个病，因为现在娱乐场所这么多。
这个原本喜欢旅游，走遍半个中国的女人，现在已经没有了生活的目标，即使把钱堆在我面前，我也不觉得开心。
她每天只想三件事情：自杀、救家人、报复别人。
在广州还有5个和她联系紧密的女病友，她们相约去报复别人，去酒吧，或者上网，寻男性开房。
她先后在酒吧认识了一个男人，在网上认识了2个男人，都是开小车的。她和其中两人发生性关系时，没有采取安全措施，只有一个男人主动提出戴安全套，但和她有深吻。
两个星期后，她分别打电话给他们，发现他们都在咳嗽。那个戴了安全套的男人问她，你是不是有病？她说，你才有病。他想带她一起去检测。她说，可以。
反正我是阴性，又不是阳性，我怕什么？末路说。但是男人打消了和她一起检测的念头。
末路在和Q Q群里的病人私聊时，发现每个人都有报复社会的行为，深圳的一名男性病友，已经通过上网、去酒吧、找小姐、抠女等方式，传染了100多名女性，均记录了她们的手机号码。
老公又出差了，她打电话给他，发现他的房里有女人说话的声音。
老公问她，你真的不再管我了吗？
她说，你找(小姐)越多越好，传染得越多越好，我们各自传染给别人吧。
电话里，老公笑了笑。
11月30日下午，在接受完记者采访后，她用围巾包着一箱子刚刚收到的拉米夫定，走上街头，她穿着一件露脐装，露出一片白皙的腰身，她看上去很健康，和走过我们身边的每个人并无差别。
□采写：本报记者 鲍小东
http://gcontent.nddaily.com/d/fb/dfb84a11f431c624/Blog/e98/ac533f.html
http://news.southcn.com/c/2009-12/02/content_6709389.htm
http://news.qq.com/a/20091202/001250.htm
国家疾控中心已成立课题研究组，但这个特殊人群的大多数仍生活在病痛与恐惧中末路疯狂：阴性感染者的深渊类别：深度调查 作者：鲍小东 原创 浏览量：0 发布时间：2009-12-02 手机看新闻
版次：AT04 版名：深度周刊 重磅 稿源：南方都市报 摘要：所谓扎阳，是指阴性感染者用针头在艾滋病人身上扎针，然后再回扎自己，或直接与艾滋病人性交，使自己变成真正的艾滋病人，以此获得治疗。
末路是个富人，她和老公各拥有几套房产。但现在的她每天只想三件事情：自杀、救家人、报复别人。
老公问她，你真的不再管我了吗？她说，你找(小姐)越多越好，传染得越多越好，我们各自传染给别人吧
所谓扎阳，是指阴性感染者用针头在艾滋病人身上扎针，然后再回扎自己，或直接与艾滋病人性交，使自己变成真正的艾滋病人，以此获得治疗。
尽管目前国家非常重视，但还是未恢复这个漂亮女人的生活信心，她仍要继续用性传播她的疾病。
她认为自己得了艾滋病，但多次HIV抗体检测结果均为阴性，她又认为自己得了艾滋病变异病毒。她给自己取了一个消极的网名叫末路。
在中国，有大量类似人群，他们在网上聚集，自称为阴性感染者。但专家认为，他们只是恐艾。
通过长达三个月的调查，中国疾病预防控制中心(以下简称CDC)成立了疑似艾滋病课题研究组，10月30日，这个课题研究组始在全国招募60名病人分批进京，参加研究。
虽有不少病人积极响应，但更多病人像末路一样，对这次研究并不乐观。
研究课题组计划委托国家CDC最权威的实验室对他们是否感染艾滋病病毒作出决定性的复测，并联系在京的临床专家，对这些病人共同进行临床检查，并提出诊疗意见。
但病人们认为，他们得的是未知病毒，或者艾滋病变异，而研究课题组只是排除已知病症，因此没有意义。
我没有申请去北京，因为没有意义。末路说，国家只有研究和治疗同时进行，才能减少病人痛苦，才能减少病人报复社会，并减少更多人被感染。
艾滋症状，但检测总是阴性
末路称，她已经报复性地传染了3个男人，都是通过性进行传播的。
即使现在，末路仍是一个漂亮女人，如果不扬起脖子，没人会看到她的脖子上一块块明显的淋巴结，她的皮肤粗糙。而发病前，她更加漂亮，皮肤光滑、白皙，没有皮疹，脸上没有斑点，不少男人以为她还未结婚生子，并追求她，但在发病前，她性观念保守，除了老公，她没有接受过别的男人。
她的病是老公染回家的。
她家在广州。只要不出差，老公每晚都回家吃饭，但他经常出差。5年前，老公一次出差了2个月，回来后咳嗽不止，吃药、打吊针都不见效。她和老公发生性关系后两个星期，也出现了很多症状，如皮疹、肌肉跳动、淋巴结肿大等等，体重一下子减轻了七八斤，老公体重也减少了十斤。
他们进行H IV抗体检测和治疗，结果都是阴性，病情也不见好转。一年多后，很多症状自行消失了，这个拥有大学学历的女人以为这是拜神的结果。
但3个月前，各种症状又开始重新回来了。
老公承认，他在外面找了小姐。但他认为，他们只是感染了未知病毒，而她认为，他们感染的是艾滋病变异病毒，因为症状和艾滋病完全一致。
武汉的桂希恩，北京的李太生、吴焱，广州的蔡卫平，杭州的时代强等人都是国内艾滋病临床领域知名专家，每年有很多病人从全国各地慕名找到他们，或者打电话向他们咨询。他们在接受本报记者采访时称，他们所在的医院每年都会接待数千名这种病人，他们认为，虽然不排除一部分人感染了未知病毒，但大多数人都是恐艾。
而性，起到了至关重要的作用，因为这些病人大多数都有不洁性行为。上海社会科学院艾滋病社会政策研究中心主任夏国美称，如果病人本身没有高危行为，恐惧是可以很快消除的。
全家中招，哥哥死了
11月30日，末路从包里掏出侄女的照片，出示给记者。照片上的小女孩腿细如柴，下巴尖尖，表情抑郁。
她家很有钱，她身上的一件衣服都是五六百元钱。末路说。但是小女孩也感染了这个病毒。
在长达三四年的潜伏期里，虽然还有疲劳、咳嗽等少数症状，但末路以为自己没有感染艾滋病，而且医生们骂她神经病，有心理问题。于是，她和家人如常生活着。
她和母亲经常一起吃饭，她还常常抱着侄女，而除了母亲和侄女外，她发现其他所有家庭成员也都感染了相同的病毒，包括父亲、两个哥哥和嫂子们。
去年，她的一个哥哥去世了。他长得很帅，又十分富有，经常开着宝马抠女，他不喜欢找小姐，因为太脏了。
3个月前，潜伏期过去了，很多病症回到末路的身体，她发现身体肌肉萎缩，出现大量皮疹，腹泻严重等等。这时，她回想哥哥去世前的情景，她又开始怀疑自己得了艾滋病，而且是她把病传染给了哥哥。他也是肌肉萎缩，死前，手臂只有我现在的二分之一粗。
据其回忆，她哥哥早期症状和她当初完全一致，咳嗽非常严重，感染三年后，死于肺癌。
对于专家们 的 恐 艾说，末路质问：如果只是恐艾，怎么会有这么多症状，而且如此传染呢？
很多 病人 都有着与末路相 似 的经历：多次检测被排除艾滋病，医生们认为他们是恐艾，建议他们与家人正常生活，解除碗筷分开、不过夫妻生活等等隔离式生活。结果是全家中招。
这是他们痛恨医生和恐艾说的原因。
他们认为，唾液都可以传染该病。所以你不要以为只有小姐才有这样的病，也许，你身边的某个人就有这样的病。末路说。
深圳网友面对称，他的公司有十几个人都被他传染了，因为他是搞采购的，饭局很多。他认为是通过聚餐传播的。
病情复发以来的3个月，末路痛苦不堪。她周身疼痛，在医院里，她想跳楼自杀，但她住在二楼病房，如果跳下来，不但不会死，还会残疾，因此她没跳。
现在，她加入了一个自杀群，在Q Q群里，这些得了绝症的人们探讨着各种自杀方式，有的人相约一起自杀。
没有奇迹经常打电话哭着问我，会不会自杀，我说，会啊，但是等我的孩子长大点，或者我带着他一起自杀。末路说。
她的孩子已经4岁了，由保姆带着，她说，孩子和保姆都被感染了。为了减少痛苦，她尽量少和孩子呆在一起。她甚至和老公挑明，她不想再管孩子了。
进京和扎阳
7月份，曾光的出现曾一度让他们获得些许希望。
曾光是国家C D C流行病学首席科学家、博士生导师，W H O传染病监测和应急反应科学委员会委员，中国现场流行病学培训项目执行主任，国务院特殊津贴获得者。
曾光认为，这是需要认真调查解决的公共卫生问题。他安排自己的助手展开了长达三个月的调查。
10月30日，疑似艾滋病课题研究组从中国疾病预防控制中心性病艾滋病预防控制中心获得经费支持，开始在全国招募60名病人分期参加研究。一切用于研究目的的检测费用由课题组承担。个人的差旅费由病人自费承担，如对差旅费支付确有困难者，也可以提出资助申请。
课题组将委托国家CDC最权威的实验室对病人是否感染艾滋病病毒作出决定性的复测，并组织国内权威的临床、医疗以及科学研究的专家，共同组成专家组，对病人共同进行临床检查，并提出诊疗意见。
在知情同意的前提下，课题组将匿名公布一部分病人的资料、医生的诊断意见和课题组建议，供那些未参加的病友们参考，共享研究的成果。课题组招募病人时强调申请者要有热心为群体服务的意愿和决心，在自己症状好转后会通过网络帮助他人。
曾光在最近的一封公开信中表示：虽然解决你们所反映的问题不是我本人职能分工内的工作，我们的精力和能力也很有限，但为了能对你们提供帮助，我们还是自愿开展了这项工作。我们的参与是短暂的、启动性质的，主要是为了探索解决问题的可能性和有效途径，从而向有关部门反映你们的情况，并对可持续性地应对你们所反映的问题提供建议。
我们会将群体情况向国家反映，以争取更多的人对这个群体进行关注及开展研究。公开信称。
但和末路一样，很多病人对此研究不表乐观。因为他们认为自己感染了未知病毒或者艾滋病的变异病毒。而课题组排除的只是已知病毒。
之前的10月14日，本报刊发了1.5万字的关于阴性感染者的调查报道，10月20日，12名来自全国各地的心急病人，自发前往北京。国家CD C相关部门热情接待了他们，并及时动用国内最先进的技术，同时使用多种方法，对他们进行了H IV病毒、丙肝、梅毒、免疫值等项目进行检测，结果发现他们均无问题。
一位进京的病人透露，检测结果出来后，曾光曾私下表示，他们感染的并非同一种病毒，问题比较复杂，但肯定不是艾滋病。
尽管如此，病人们仍然认为，排除艾滋病的结论未必正确，因为身体的症状不得不促使你往这(艾滋病)上面想。
末路开始吃拉米夫定、唐草片等治疗艾滋病的药物，她发现，病情得到控制，浑身不再那么痛了。她的妈妈和她一起吃相同的药，结果病情也得到控制。
现在，她每月要花1000多元钱，从上海邮购这些药物。老公因为不相信得了艾滋病，自己另外找药吃。
我知道在Q Q群里，像我这样的有钱人只有几个，大多数人经济都很困难，他们打一份工，工资一两千元，根本吃不起这药。所以，他们想去扎阳。末路说。
所谓扎阳，是指阴性感染者，用针头在艾滋病人身上扎针，然后再扎在自己身上，有人直接与艾滋病人性交，使自己变成真正的艾滋病人，以此获得国家免费的艾滋病治疗药物。他们通过Q Q群寻找艾滋病人。
只想着自杀和报复
末路是个富人。她和老公各自经济独立。老公拥有3套房子，她自己在广州等地也有三四套房子，每套房子都值百万元，并拥有私家车。她还有一家工厂，数十名工人。硕士毕业的老公另有职业。
以前，她早上8点到工厂，晚上6点回家，加班时，夜里11点才回家，每天看到账本上有收入，就很开心。
但是现在她每天睡到中午12点才起床，每天去工厂随便处理一下问题就回家睡觉，工人们打电话向她反映问题，她让他们自己解决。工厂快亏本了。她投入股市的100多万元钱，只剩下30万元，她现在连看都懒得看了。
现在我就希望面前是一张床，可以躺上去睡觉。11月30日午后末路说。
对于改变了整个家庭命运的老公，她已经不再怨恨了，加入Q Q群后，发现很多人都得了这个病，那么我即使现在不得，将来也会得这个病，因为现在娱乐场所这么多。
这个原本喜欢旅游，走遍半个中国的女人，现在已经没有了生活的目标，即使把钱堆在我面前，我也不觉得开心。
她每天只想三件事情：自杀、救家人、报复别人。
在广州还有5个和她联系紧密的女病友，她们相约去报复别人，去酒吧，或者上网，寻男性开房。
她先后在酒吧认识了一个男人，在网上认识了2个男人，都是开小车的。她和其中两人发生性关系时，没有采取安全措施，只有一个男人主动提出戴安全套，但和她有深吻。
两个星期后，她分别打电话给他们，发现他们都在咳嗽。那个戴了安全套的男人问她，你是不是有病？她说，你才有病。他想带她一起去检测。她说，可以。
反正我是阴性，又不是阳性，我怕什么？末路说。但是男人打消了和她一起检测的念头。
末路在和Q Q群里的病人私聊时，发现每个人都有报复社会的行为，深圳的一名男性病友，已经通过上网、去酒吧、找小姐、抠女等方式，传染了100多名女性，均记录了她们的手机号码。
老公又出差了，她打电话给他，发现他的房里有女人说话的声音。
老公问她，你真的不再管我了吗？
她说，你找(小姐)越多越好，传染得越多越好，我们各自传染给别人吧。
电话里，老公笑了笑。
11月30日下午，在接受完记者采访后，她用围巾包着一箱子刚刚收到的拉米夫定，走上街头，她穿着一件露脐装，露出一片白皙的腰身，她看上去很健康，和走过我们身边的每个人并无差别。
□采写：本报记者 鲍小东
K
_Kim_
Guest
hanchuchu,
I translated those articles, but the story is not clear to me.
Are they saying that some people that are infected with the mysterious illness are purposely contracting AIDS so that they can get health care?
Did I understand that some are having sex with AIDS patients or using acupuncture needles of AIDS patients to give themselves HIV?
And what about the CDC Research Group in Beijing? Is this the group that you've been in contact with? What is this group doing to help?
~Kim
I translated those articles, but the story is not clear to me.
Are they saying that some people that are infected with the mysterious illness are purposely contracting AIDS so that they can get health care?
Did I understand that some are having sex with AIDS patients or using acupuncture needles of AIDS patients to give themselves HIV?
And what about the CDC Research Group in Beijing? Is this the group that you've been in contact with? What is this group doing to help?
~Kim
main points of the latest report
Title--the last crazy moment down to the "end of the road"
subtitle--Why HIV-negatives (people infected with the unknown virus) are willing to have sex or share needles with HIV-positives? Because once tested positive, they can have access to medical care.
Main body text summary
1. a netizen named "end of the road"--whole family get infected. Her brother died of lung cancer. Now, she and her husband are crazily spreading the virus to other people on purpose. She only wants to retaliate the society or death.
2. a nitizen named "face the reality"--accidently passed the virus to more than ten colleagues in his company located in Shenzhen
3. CDC--look into it without definite conclusion
4. infected plan to committe collective suicide
Thanks for following up.
I also want to remind you that it is the news report and I cannot ensure every word is real. But obviously, the infected are going crazy...
I am also suffering everyday, but never think retaliation is a good way to solve the problem. All we need is the CDC to say "yes" to Charles and let the cooperation happen.
I was told that the CDC just postponed the test recently.
Title--the last crazy moment down to the "end of the road"
subtitle--Why HIV-negatives (people infected with the unknown virus) are willing to have sex or share needles with HIV-positives? Because once tested positive, they can have access to medical care.
Main body text summary
1. a netizen named "end of the road"--whole family get infected. Her brother died of lung cancer. Now, she and her husband are crazily spreading the virus to other people on purpose. She only wants to retaliate the society or death.
2. a nitizen named "face the reality"--accidently passed the virus to more than ten colleagues in his company located in Shenzhen
3. CDC--look into it without definite conclusion
4. infected plan to committe collective suicide
Thanks for following up.
I also want to remind you that it is the news report and I cannot ensure every word is real. But obviously, the infected are going crazy...
I am also suffering everyday, but never think retaliation is a good way to solve the problem. All we need is the CDC to say "yes" to Charles and let the cooperation happen.
I was told that the CDC just postponed the test recently.
Are you walking away?
It seems like people are start walking away from this post. I think Kim helped a lot, really a lot. Things are moving forward with UCSF. However, what will happen next is uncertain. The CDC just postponed the test. Although the subsequent news appeared online. Normal people still don't pay much attention.
It seems like people are start walking away from this post. I think Kim helped a lot, really a lot. Things are moving forward with UCSF. However, what will happen next is uncertain. The CDC just postponed the test. Although the subsequent news appeared online. Normal people still don't pay much attention.
K
_Kim_
Guest
hanchuchu,
None of us have access to international media. If we did, we wouldn't be in the position we are in. We are a group of very sick patients and our governments have done nothing but stand in the way of helping us get treatments. We sympathize with you. We understand how frustrating it is to be sick and not know why. We are also afraid about who we might infect.
But you also have to understand that this is the first time in decades that those with CFS have a chance of hope. Our attention is singly focused on the XMRV news and progress. Some of us (points finger at self) have become obsessed with reading every word in internet print about this unraveling story.
So, our parallels allow us to have greater empathy for you plight, but our current on-the-edge-of-your-seat story has captured our full attention. I know that I cannot speak for all of the members of this forum, but I believe that we want to help you, but have run out of ideas.
Please don't take the lack of response to mean that we don't care. But this group has taken on more advocacy in the last 2 months than is probably good for our health. We are writing letters to our government representatives, to newspaper editors, to doctors, to researchers, to TV celebrity doctors. And so far, only a few of these efforts have made any visible difference. Many of our members have pushed themselves into severe relapses recently (known as "crashes") and are putting their health at stake to try and get their voices heard.
I will not abandon you. And there are many members who are reading every one of your posts and sending you prayers. Some of them have sent me private messages telling me so. I believe you will find the answers you seek. Please be patient.
None of us have access to international media. If we did, we wouldn't be in the position we are in. We are a group of very sick patients and our governments have done nothing but stand in the way of helping us get treatments. We sympathize with you. We understand how frustrating it is to be sick and not know why. We are also afraid about who we might infect.
But you also have to understand that this is the first time in decades that those with CFS have a chance of hope. Our attention is singly focused on the XMRV news and progress. Some of us (points finger at self) have become obsessed with reading every word in internet print about this unraveling story.
So, our parallels allow us to have greater empathy for you plight, but our current on-the-edge-of-your-seat story has captured our full attention. I know that I cannot speak for all of the members of this forum, but I believe that we want to help you, but have run out of ideas.
Please don't take the lack of response to mean that we don't care. But this group has taken on more advocacy in the last 2 months than is probably good for our health. We are writing letters to our government representatives, to newspaper editors, to doctors, to researchers, to TV celebrity doctors. And so far, only a few of these efforts have made any visible difference. Many of our members have pushed themselves into severe relapses recently (known as "crashes") and are putting their health at stake to try and get their voices heard.
I will not abandon you. And there are many members who are reading every one of your posts and sending you prayers. Some of them have sent me private messages telling me so. I believe you will find the answers you seek. Please be patient.
jackie
Senior Member
- Messages
- 591
Hanchuchu...I was wondering if you have investigated and/or received any response from the two sources I suggested in post#86 of this thread?
By the way, I just found an E-mail for EV MED RESEARCH - evmed@sbcglobal.net
My own Primary Care Dr. has dropped my HMO Insurance Coverage as of Dec. 01...and I have no P.C. Doc for the time being (unfortunately, this was the one I gave copies of this thread/info to!...so I don't expect a response from him)
Also, have you read about "Oxymatrine" or "Matrine" (both apparently used extensively in China for everything from Cancer to Hepatitis). Made from the Sophora plant - it is used as an Immune-modulator.
Several years ago I intended to import it from China to add to my treatment protocol of Anti-virals - but decided against it. Now, a milder version in a supplement form (called "Equilibrant") is available from a supplier in the U.S.
Something to consider researching.
jackie
By the way, I just found an E-mail for EV MED RESEARCH - evmed@sbcglobal.net
My own Primary Care Dr. has dropped my HMO Insurance Coverage as of Dec. 01...and I have no P.C. Doc for the time being (unfortunately, this was the one I gave copies of this thread/info to!...so I don't expect a response from him)
Also, have you read about "Oxymatrine" or "Matrine" (both apparently used extensively in China for everything from Cancer to Hepatitis). Made from the Sophora plant - it is used as an Immune-modulator.
Several years ago I intended to import it from China to add to my treatment protocol of Anti-virals - but decided against it. Now, a milder version in a supplement form (called "Equilibrant") is available from a supplier in the U.S.
Something to consider researching.
jackie
Sorry, guys
I am sorry. The silence in the forum just caused my panic. I suddenly realized you are as sick as us. If you need anything from China, just let me know. I will use my best efforts to provide whatever you want for the heal to CFS.
Kim, thanks for being with us for such a long time.
Jackie, I cannot remember whether I have sent the email or not, because I sent too many emails. I will check, if not, I will definitely send.
since UCSF is in contact with the CDC, I don't think I should seek more assistance from the research center.
Thanks. I will keep you updated.
I am sorry. The silence in the forum just caused my panic. I suddenly realized you are as sick as us. If you need anything from China, just let me know. I will use my best efforts to provide whatever you want for the heal to CFS.
Kim, thanks for being with us for such a long time.
Jackie, I cannot remember whether I have sent the email or not, because I sent too many emails. I will check, if not, I will definitely send.
since UCSF is in contact with the CDC, I don't think I should seek more assistance from the research center.
Thanks. I will keep you updated.
Alesh
Senior Member
- Messages
- 191
- Location
- Czech Republic, EU
"In China, there are tens of thousands of people infected with an unidentified virus after having sex out of marriage such as sex trade and one night stand, even with condoms in the whole intercourse process, including oral sex."
May I ask why it matters that the victims had "sex out of marriage"?
I lived in a communistic country until 1989 and the general health care was in many respects better than it is now.
I would hate to be wrong and I apologize in advance if I am but your story seems to look like an Christian "values" ad.
May I ask why it matters that the victims had "sex out of marriage"?
I lived in a communistic country until 1989 and the general health care was in many respects better than it is now.
I would hate to be wrong and I apologize in advance if I am but your story seems to look like an Christian "values" ad.
Alesh,
Many well-educated people are worried about the development of China...
Sex plays a very important role in the transmission of this disease. In big cities, people start to have sex at an earlier age and many have several sex partners. You can find "one night stand" bars runing underground. However, I emphasized a lot on the way of spreading--it could be passed via saliva. Many infected claimed that their whole family get infected because they live together. The Chinese always share the same dish...but people in western world always divide the food to their own bowels. Some was infected by their girlfriends or boyfriends, with condoms in the whole process. That's why we always believe the virus can be passed via saliva, meaning kiss-pass-virus.
an Christian "values" ad--well, it is all my personnel value and has nothing to do with this post. I exposed myself to western culture and received a pro-west education. I hope I answered your question.
I could live a very good life if I were not sick.
Always, people doubt the story I am telling...
Unfortunately, one CDC staff in Guangdong province get infected as well when some infected visited him. Then, the CDC realized it is not "fear of aids"...
- Messages
- 877
symptoms
Hi Han,
I have been following this thread, and am curious what your/your friends symptoms are for this disease? Sounds terrible, but I'm curious if it isn't the same thing some of us already are dealing with?
My symptoms are:
flu like feeling
mental and physical fatigue after exertion, ongoing fatigue and weekness
dizziness
nausea
headaches
ringing in ears
swollen lympth nodes
chest pain
sensitivities to chemicals in foods, cleaners, perservatives, medications
overall soreness of joints
poor sleep
poor memory and cognitive disfunction
problems with gums
GI tract problems
mood problems at times; depression, easy irratated, anxiety
I know each person has a different set of symptoms, and varying levels of disability. ANy of this sounds like your problem?
thx
mark
Hi Han,
I have been following this thread, and am curious what your/your friends symptoms are for this disease? Sounds terrible, but I'm curious if it isn't the same thing some of us already are dealing with?
My symptoms are:
flu like feeling
mental and physical fatigue after exertion, ongoing fatigue and weekness
dizziness
nausea
headaches
ringing in ears
swollen lympth nodes
chest pain
sensitivities to chemicals in foods, cleaners, perservatives, medications
overall soreness of joints
poor sleep
poor memory and cognitive disfunction
problems with gums
GI tract problems
mood problems at times; depression, easy irratated, anxiety
I know each person has a different set of symptoms, and varying levels of disability. ANy of this sounds like your problem?
thx
mark
Eric Johnson from I&I
Senior Member
- Messages
- 337
Sex out of marriage can be a marker for promiscuity, especially where it is not so common -- in a place with more conservative social mores than central and western europe. Which would certainly include China and all of asia. Though even then, it is not, of course, a perfect marker of promiscuity and high lifetime partner numbers.
Promiscuity certainly has a big relationship to sexually transmitted disease, regardless of what christians, druids, or zoroastrians say about it.
Promiscuity certainly has a big relationship to sexually transmitted disease, regardless of what christians, druids, or zoroastrians say about it.
Mark, we have all the bolded symptoms... In addition, the white and yellow tongue coating, and the blood stain scattered therein. We also have blood stains underneath the skin, as small as needle-head. Weight-loss and hair-loss. The standing and breath difficulty. The skin will become very dry. You feel a swimming snake or worm is moving inside your body and bite you everywhere. the muscle withers. The traditional doctor diagose "the failure/dsyfunction of spleen". The CD4 and CD8 is lower than normal people and ratio between them will reverse.Some people think it is CFS, but many don't. The way of spreading is different. Sex is only one way of passing the virus. The infected all believe it can be passed via saliva. Some claimed they can pass the virus via sweat... The CDC guy being infected in Guangdong insists it is a super-bacteria instead of virus. People have different ideas about this. But many don't believe it is the mutation of HIV, because no matter how the virus evolves, it can not be so infectious and the syptoms are continous. We all know HIV will have dormant period.
we are waiting for the CDC to say "Yes" to Charles and let him to identify the unkown so-called "virus" through virochip.
I don't want to guess anymore, which is meaningless. The syptoms are caused by co-infection, I think.
In China, students in junior high school even starts to have sex... young people always joke "you can only find virgins in the kindergarten". It is sort of exaggeration. But it reflects the big change of the attitude towards sex in China. You can find call-girls in hotels, bars, kTV room... one night stand frequently happens in big cities.
jackie
Senior Member
- Messages
- 591
Hi Hanchuchu. Petechiae is also common in Viral infections (problems with blood coagulation), and many of us (especially those with Enteroviruses have the "Tongue" you describe) From what I know of Enteroviruses - they're initially spread through contact with contaminated food/water and person to person, I believe.
I know you are tired of speculating - but your checklist of symptoms SOUNDS like ME/CFS, caused by XMRV or "XAND" (sexual transmission, saliva)...on a monstrous scale.
Have the WPI, Dr. Coffin, etc. been notified...and what has been their response?
VIPDX or Cooperative Diagnostics Labs willing to send trial test kits? Is ANYONE responding?
jackie
I know you are tired of speculating - but your checklist of symptoms SOUNDS like ME/CFS, caused by XMRV or "XAND" (sexual transmission, saliva)...on a monstrous scale.
Have the WPI, Dr. Coffin, etc. been notified...and what has been their response?
VIPDX or Cooperative Diagnostics Labs willing to send trial test kits? Is ANYONE responding?
jackie