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[白白闲谈] 分享下我的白癜风非主流治疗篇!(连载中)

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小学五年级

发表于 2014-1-31 18:25:29 | 显示全部楼层
谢谢你的分享,你的孩子真优秀有好的心态。
如果您认可本论坛,欢迎告诉身边的病友,让更多的朋友来到这里,你+我=手拉手!

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小学五年级

 楼主| 发表于 2014-1-31 21:29:12 | 显示全部楼层

你说的这几个药,不熟悉。你可以上网搜搜,看看别人是怎么说的。
因为我孩子的白斑在脸上,外用药就要千万小心。很多外用药都是不建议用在脸上的。
类固醇就是激素拉。医生朋友告诫我们,如果过量使用类固醇,可能会引起其他副作用,例如 皮肤变的粗糙。 我们还是坚信这个病理在体内,只是表象在皮肤。所以,如果体内调节好了,皮肤自然就正常了。 再则说,养睫毛也没药可搽。

如果你一定要用这类固醇的药, 强力建议,用2个礼拜,停一个礼拜。 让皮肤有个休息的时间。

你的孩子几岁了?

新年快乐。

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小学五年级

 楼主| 发表于 2014-1-31 21:39:58 | 显示全部楼层
在你去看医生之前的准备工作:
1. 问问别人这医生有没有治过白癜风。
2. 问问他们有多少白癜风病人;如果医生没有经验的话,你就要在网上多找点信息,和他一起讨论治疗方案。
3. 问问以前有没有治过白癜风的小孩。大人和孩子还是蛮有不一样的;
4。 问问他们有没有武德灯。 这个是最基本的,通常医院都有的。也保不齐,有些小医院不备。

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小学五年级

 楼主| 发表于 2014-1-31 22:10:50 | 显示全部楼层
在皮肤专家的办公室的时候,你要:
1. 让医生做甲状腺检查。有些时候,白癜风和甲状腺是有关联的。如果甲状腺有问题,那就先治甲状腺。 甲状腺治好了,白癜风虽然不会好了,但至少可以稳定下来。
2. 你也许要检查你孩子的叶酸和维生素B 12. 这两个指标可能会有影响,查查应该没坏处。
3. 让武德灯照照,看看那些是白癜风,那些地方正在形成白癜风;
4.  如果医生给了药,一定要问问有什么副作用。所有的药多有副作用。 有些药可以用食物代替的。 比如,据我们了解
叶酸 -  带绿叶的青菜 。
硒  - 巴西豆;
补骨脂 - 芹菜,胡萝卜,无花果
有些病人拿到药物后,不知道应该怎么办。所以,一定务必要问清楚怎样合理使用给的药。
因为白癜风是一个易诊难治的病。 西医不知道发病的原因。如果你自己多花点时间做一些研究,你都可以成为专家。
有些医生会开一些自己并不是很清楚的药给病人,或许是为了盈利,或许是病人的要求。 你自己要对自己负责,不要过于依赖医生。现在很多穿着白衣的也不是天使。
找出自己觉得合适的治疗方案。我以前总是很相信医生。白癜风就不行。你看街头的小广告,最多的是有关白癜风,牛皮癣,性病。因为正规医生对这些没有办法。
我们最近看过的三个皮肤医生(西医)就明确的告诉我们,西医对白癜风没办法。给的类固醇外用药也许会起作用。这些药都不是有效药。

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小学五年级

 楼主| 发表于 2014-1-31 22:45:23 | 显示全部楼层
zty7877 发表于 2014-1-31 16:20
能知道是哪个药您给扔了么不能用的么,您真是细心的父母,我不知道我孩子用的药是不是不能用的,我家用的 ...

我在这里级别太低,没有权限加好友。 等有权了,再加。 不好意识。

你不用担心,一定会好的。注意孩子的情绪,和老师谈谈

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大学四年级

发表于 2014-1-31 22:59:03 | 显示全部楼层
期待下文,谢谢。

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小学五年级

 楼主| 发表于 2014-2-1 04:22:05 | 显示全部楼层
怎样帮助你的孩子应付实际遇到的问题

这里列出来的事情,有的你可能早已经知道了。 不过,我还是列出来,让大家一起分享

1. 让别人知道事实
正确面对事实。如果有人问起来的话,尽量实事求是的回答。要让对方知道什么是白癜风, 白癜风是不会传染的!  孩子知道自己的状态以后,能正确认识自己,在和小朋友玩耍的时候,会有开朗的心情。
2.  让孩子适应?
        如果可以的话,找几个孩子的同学和孩子先玩玩。告诉这些孩子,什么是白癜风。白癜风是不会传染的。 这样,小孩子们就不会害怕了。 和你的孩子一起玩的时候就没有隔阂了。这样的话,至少有几个同学习惯了孩子的白癜风,在学校里也就不会特意注意了。 上学应该问题不大了。
3. 开学第一天做什么?
第一天上学一定要告诉班主任孩子的情况。再教育一下老师。让老师明白什么是白癜风。这样,老师明白了,才能告诉班级的同学。周围的孩子也就明白了,和你孩子相处的时候就没有间隙了。
4. 我们孩子的班主任在这件事情上处理的很好。 周围的同学基本都能理解每个人都是不一样的。各人都有美中不足的地方。 有些孩子过敏,有的孩子近视。 白癜风也只是其中的一个而已。没什么大不了的。不会传染的。
孩子还经常开导我们,上帝造人,各人有各人的不同。我们只是不知道神的心意。再者说了,白癜风也不会传染,也不影响她健康上学。
5. 时刻注意孩子在学校的活动。密切关注孩子情绪的变化。
6. 学习尊重别人,也让别人尊重自己。
告诉别人不要盯着看;盯着看人家的白斑是非常不礼貌的。
7. 不要总是把白癜风放在第一位。
有的时候,我们总是歇斯底里的问孩子,别人对你怎么样,有没有人问这问那? 实际上,别人可能根本不关心。
8. 偶尔也让你和孩子伤心一下
        为人父母的总是很紧张自己的孩子。第一次看到孩子得了白癜风,没有一个父母不会伤心难过的。我们也看过这么多专家,我们也在努力寻找医治的办法。
         孩子和我们一样都需要一个减压的方法。
9. 不要担心未来。着眼现在;
10. 让孩子自己决定怎样才对他最合适。

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小学五年级

 楼主| 发表于 2014-2-1 04:25:59 | 显示全部楼层
码了那么多天的字,才到小学一年级。好慢喔。

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小学五年级

 楼主| 发表于 2014-2-1 04:40:22 | 显示全部楼层
自学成医(1)

不吃面粉。 这个观念对很多人来讲,是不可接受的。 可是现实就是这样。 接下来的几篇就讲讲为什么不能吃面粉。
面食里面有面筋(Gluten),这是所有免疫系统疾病的根源。1. 北方比南方发病率高。2. 小孩发病的时候通常附带肠胃不适。我的小孩从学前班就一直抱怨肚子痛。自从停止吃面食以后的几个月以来,肚子不再痛了;
全世界面筋过敏的比例和白癜风的比例差不多,都在2%左右。而且现在的面粉里面筋含量是我们祖辈那是的15倍。我们根本消化不了这么多面筋。

英文好的可以自己先看这篇文章。有不懂的给我留言,我找时间给翻译,然后贴到这里。

这篇文章建议如果有以下症状的人应该考虑不要吃面筋(面粉)了:
1型糖尿病
桥本氏甲状腺炎
格雷夫斯氏病
溃疡性结肠炎
红斑狼疮(狼疮)
白癜风
阿狄森氏病
舍格伦综合征
恶性贫血
硬皮病
慢性自身免疫性肝炎
疱疹样皮炎
风湿性多肌痛
自身抗体溶血性贫血
腹腔疾病



The Root Cause of Your Autoimmune Disease — and why treating it can be easier than you think

by Dr. Jonathan V. Wright, Guest Writer

Originally published in Nutrition & Healing newsletter; Vol. 8 Issue 12, February 2012.



Dr. Jonathan V. Wright

All it takes is one look around the grocery store to see that gluten sensitivity is on the rise. Because of the increase in celiac disease, gluten-free foods are more in demand now than ever before. But did you know that even if you don't have celiac disease, you might be gluten sensitive and not even know it?

It's possible – because not even many doctors know you can be gluten sensitive without the telltale gastrointestinal issues that accompany celiac disease.

But if you're suffering from an undiagnosed health problem – or even an "incurable" autoimmune disease – you should c**ider getting tested for gluten sensitivity. Believe it or not, this "hidden" sensitivity can be at the root of many illnesses – many of them "incurable" autoimmune diseases.

Ultimately, that means that treating these diseases could be a simple as adjusting your diet.

The key to understand this starts with the fairly recent research-backed realization that although gluten sensitivity and celiac disease may overlap, they are not the same illness. Let's cover that first.

Mistaken identity leads to misdiagnosis
Celiac disease – triggered by gliadin, a gluten protein – almost always features very notable gastro-intestinal symptoms, including bloating, gas, diarrhea, abdominal pain, and cramping. In medical school, we were told that celiac disease without gastro-intestinal symptoms was rare to non-existent. We were also told that if an intestinal biopsy that appeared normal meant there was no gluten sensitivity at all.

By contrast, gluten sensitivity (now research-differentiated from celiac disease) often has no gastro-intestinal symptoms at all. To make matters worse, intestinal biopsies in individuals with gluten sensitivity are often normal.

A recent research publicationi summarizes other differences between celiac disease and gluten sensitivity. The researchers wrote: "Unlike celiac disease, gluten sensitivity is not associated with increased intestinal permeability, in fact, [intestinal permeability] was significantly reduced in gluten sensitivity compared with controls."

The researchers pointed out that compared with healthy individuals, certain immune markers (for the technically inclined, IL-6 and IL-21) were elevated in celiac disease but not in those with gluten sensitivity, while another immune marker (TLR 2) was elevated in gluten sensitivity but not in celiac disease.

However, the two problems did share one similarity: lower levels of the immune marker FOXP3 when compared with healthy individuals.

These researchers concluded: "This study shows that the two gluten-associated disorders, celiac disease and gluten sensitivity, are different clinical entities…and it contributes to the characterization of gluten sensitivity as a condition associated with…absence of detectable changes in [the intestinal] mucosal barrier."

Why bother pointing out these differences between gluten sensitivity and celiac disease? It's because even many physicians don't know that it's possible to be sensitive to gluten with minimal if any gut symptoms, so they don't even look for gluten as a relatively common cause of non-gastrointestinal symptoms and illnesses, many of them autoimmune.

The overlooked cause of your autoimmune disease
Decades ago, an article in the Lancet (sorry, can't find the reference) pointed out that the then-new science of white blood cell typing, called "HLA antigens," was finding that certain diseases occurred much more commonly in individuals with certain HLA antigen types. (If you're thinking that this is just a modern, scientific way of documenting and re-stating that illnesses run in families, you're right. Genetically related individuals are much more likely to share many of the same white blood cell types, as they do the red blood cell types A, B, O and AB.)

One group of these "HLA-linked" diseases is almost entirely auto-immune. It includes the following disorders:

type 1 diabetes
Hashimoto's thyroiditis
Graves's disease
ulcerative colitis
lupus erythematosis (lupus)
vitiligo
Addison's disease
Sjogren's syndrome
pernicious anemia
scleroderma
chronic auto-immune hepatitis
dermatitis herpetiformis
polymyalgia rheumatica
auto-antibody hemolytic anemia
celiac disease
(At the time of the Lancet article, "gluten sensitivity" was not yet distinguished from celiac disease.)

The author of this decades-old article pointed out that all but one of these diseases were believed to be auto-immune diseases. He pointed out that the only disease on this list that has an external trigger is celiac disease, which was known since the 1940s to be caused by gluten and gliadin in wheat and other cereal grains. The author then speculated that gluten might actually be the external trigger for all these other illnesses that were originally thought to be of internal origin.

Over the years, I have found that this is often the case. At Tahoma Clinic, whenever we work with an individual with any of these diagnoses, we always include the secretory IgA ("sIgA") anti-gliadin antibody test. (For more details about this test see the August 2011 issue of Nutrition & Healing.)

The sIgA anti-gliadin antibody test is positive in over 90 percent of individuals with any of these problems. Subsequent total elimination of gluten and gliadin, and very often all milk and dairy also, almost always results in major improvements in the health of these individuals.

How to determine if you have an undiagnosed gluten-gliadin sensitivity
How does this relate to whether or not an undiagnosed (or "hidden") gluten-gliadin sensitivity could be to blame for many or even most of your health problems?

Remember that diseases run in families. So, if your family health history includes any of the autoimmune problems listed above, and you are personally having symptoms and health problems that haven't been diagnosed, you may well have undiagnosed gluten-gliadin sensitivity, and should c**ider having yourself checked with the sIgA anti-gliadin antibody test.

There are also more routine laboratory test clues to undiagnosed gluten-gliadin sensitivity. They all arise from a major effect of gluten sensitivity noted above: the research-proven fact that intestinal absorption of nutrients is "significantly reduced in gluten sensitivity compared with controls."

The first is a measurement included with nearly all routine physical examinati**: serum triglycerides. Triglycerides are a type of blood fat. Fats and fat-soluble vi**ins are known to be poorly absorbed by individuals with gluten-gliadin sensitivity.

At Tahoma Clinic, our colleague Davis Lamson N.D. pointed out to the rest of the physicians that a fasting serum triglyceride measurement below 50 milligrams per deciliter (normal in most laboratories is said to be 50 to 150 milligrams per deciliter) means gluten sensitivity and gluten-induced malabsorption until proven otherwise. (In my experience, this has been true nearly 100 percent of the time.) Dr. Lamson also points out that any individual with both undiagnosed symptoms and health problems and a fasting serum triglyceride below 75 milligrams per deciliter should always be checked for gluten-gliadin sensitivity too, as the probability is high.

Poor intestinal absorption is also to blame for abnormalities in two other tests commonly recommended by practitioners skilled and knowledgeable in natural medicine: the mineral analysis done with a hair specimen, and the fasting plasma essential amino acid determination. If either or both of these tests shows multiple low measurements (three or more of the essential amino acids, five or more of the essential minerals), I'll recommend testing for gluten-gliadin sensitivity. Much more often than not, the test is positive.

Of course, the ultimate proof that gluten sensitivity is the problem is the often-dramatic improvement in previously undiagnosed, chronic symptoms and health problems that always follows the total elimination of gluten-containing foods in these individuals.

Bottom line: Whether you have gastrointestinal problems or not, if you have undiagnosed symptoms or health problems – and if you have one or more of the auto-immune problems listed above in your family – you may have gluten sensitivity. The odds are even higher if your fasting serum triglycerides are below 75, and/or your fasting plasma essential amino acid or hair mineral tests show multiple lower than normal values.

The spreading epidemic of gluten sensitivity
As little as 10 years ago, gluten-free products were hard to find. Twenty years ago, it was almost impossible to find them except in health food stores. Now, it seems gluten-free products are everywhere, even in some convenience stores. Obviously, more and more people are buying gluten-free.

Gluten sensitivity isn't an infectious disease, so why does there appear to be a spreading epidemic?

Although there probably isn't a spreading epidemic of gluten sensitivity itself, there's certainly been a spreading epidemic of a research-dem**trated "trigger" for the problem.

A little-recognized reason for the seeming epidemic of gluten sensitivity can be traced directly to the use and over-use of antibiotics, all beginning in the 1940s.

Mainstream Medicine doesn't understand this at all, and would likely deny even the suggestion. Even many natural medicine practitioners overlook this problem. However, both groups do know that use and overuse of antibiotics has caused many, many Candida albicans (yeast) infecti**.

In 2003, a group of Dutch researchers reportedii that Candida albicans may stimulate the formation of antibodies to gluten as well as auto-immune antibodies against tissue transglu**inase and endomysium, other types of antibodies found in many gluten-sensitive individuals.

In 2009, another group of researchers reported a single case of chronic candida infection in a four-year-old boy who also was found to have elevated anti-gliadin antibodies. Treatment with anti-fungal patent medicines resulted in improvement in the candida infection, while at the same time the anti-gliadin antibodies declined. Although not a controlled study or even close, this case supports the findings of the research reported in 2003.

In addition to improved diagnostic techniques finding more and more individuals with gluten sensitivity (read more about that on page XX), it appears very likely that the use and overuse of antibiotics leading to many more candida infecti** has in turn resulted in many more cases of gluten sensitivity also.

A simple solution to an "incurable" disease
In 1989, my wife Holly and I visited the office of Dr. Christopher Reading in Dee Why, a suburb of Sydney, Australia. He showed us documentation of over 500 individuals who came to see him with a diagnosis of lupus, a usually-thought-to-be incurable auto-immune disease. With hard work on their own and with Dr. Reading's treatment, these individuals eliminated all signs and symptoms of lupus as well as the patent and formerly patent medicines used to treat it.

Mainstream medicine then and now knows of no cure for lupus, but usually tries to control the symptoms with powerful patent and formerly patent medicines, all too frequently including prednisone (a very powerful pseudo-steroid), and methotrexate (an immune-system-destroying, formerly patent medicine often used in cancer treatment). Often, the effects of the patent and formerly patent medicines are as bad as or worse than the damage caused by the lupus itself.

How did over 500 individuals eliminate all signs and symptoms of lupus – and all patent medicines given for it, too – over 20 years ago? Dr. Reading had them totally eliminate all gluten, all milk and dairy products, and often other foods to which they were found to be allergic.

The other major part of Dr. Reading's treatment included repeated massive (but safe) doses of vi**ins and minerals given intravenously.

Despite the success of these 500+ individuals entirely eliminating their lupus over 20 years ago, no researcher or group of researchers have reported any follow-up investigation of Dr. Reading's pioneering work.

i Sapone A, Lammers K, et al. Divergence of gut permeability and mucosal gene expression in two gluten-associated conditi**: celiac disease and gluten sensitivity. BMC Medicine 2011;9:23

ii Nieuwenhuizen WF, Pieters RH, Knippels LM, Jansen MC, Koppelman SJ Is Candida albicans a trigger in the **et of coeliac disease? Lancet. 2003 Jun 21;361(9375):2152-4.

Since 1994, Dr. Wright has published the latest natural healing discoveries in his Nutrition & Healing newsletter. He is Medical Director of Tahoma Clinic in Renton, Washington as well as being a well-known researcher, author, and speaker on natural approaches to disease and wellness.

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小学五年级

 楼主| 发表于 2014-2-1 12:07:50 | 显示全部楼层
zty7877 发表于 2014-1-31 16:20
能知道是哪个药您给扔了么不能用的么,您真是细心的父母,我不知道我孩子用的药是不是不能用的,我家用的 ...

类固醇类外用药如果药效不厉害的话最多用半年,如果厉害的话不能超过2个月。又听说用这类药破相的都有。

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小学五年级

 楼主| 发表于 2014-2-1 12:07:52 | 显示全部楼层
zty7877 发表于 2014-1-31 16:20
能知道是哪个药您给扔了么不能用的么,您真是细心的父母,我不知道我孩子用的药是不是不能用的,我家用的 ...

类固醇类外用药如果药效不厉害的话最多用半年,如果厉害的话不能超过2个月。又听说用这类药破相的都有。

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小学五年级

 楼主| 发表于 2014-2-1 12:21:20 | 显示全部楼层
zty7877 发表于 2014-1-31 16:20
能知道是哪个药您给扔了么不能用的么,您真是细心的父母,我不知道我孩子用的药是不是不能用的,我家用的 ...

建议你的孩子忌面食,尽量不喝牛奶。 其中道理慢慢再讲。

建议你把你孩子每天的饮食公布到这里。我可以给你一些建议。

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小学六年级

发表于 2014-2-1 23:02:22 | 显示全部楼层
天啊,我最爱吃面了!有科学依据吗?

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小学五年级

 楼主| 发表于 2014-2-2 00:23:31 来自手机 | 显示全部楼层
我们都要幸福呢 发表于 2014-2-1 23:02
天啊,我最爱吃面了!有科学依据吗?

在上面的英文里有论述。我有时间给翻译一下。

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高中二年级

发表于 2014-2-2 07:45:54 来自手机 | 显示全部楼层
谢谢你的分享,我孩子也是经常肚子疼,找不到原因,大约一年后就有了bb,期待下文!
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