Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Apr 16, 2007.

  1. Slayadragon

    Slayadragon New Member

    A read a comment of yours on another thread and wanted to ask you a question in response to it.

    I most certainly would rather use scientifically proven treatments for CFS. However, since there are none, I have taken the position that I will try anything that doesn't seem like it's going to harm me and then judge the results for myself.

    From a practical point of view, that has seemed better than staying at 20% my whole life, even if it's not consistent with my overall desire for scientific rigor.

    It occurs to me that there are a lot of other diseases that conventional Western medicine can do little or nothing to treat too, though.

    This has come full force to me due to my husband's liver problems, which have become a major issue for us recently.

    It seems that regular medicine can do nothing to treat liver problems. That makes me just as frustrated as I am with regard to the medical community's inability to treat my CFS.

    (The medical community certainly recognizes that my husband has problems since they're on his basic lab tests, but that doesn't help us considering that they have no ideas for treatment.)

    You noted that your colleagues find it peculiar that CFS sufferers seek out non-traditional treatments. But we're hardly alone in having chronic and devastating problems that doctors cannot help.

    Do people with other untreatable diseases tend to seek out alternative medicine as much as CFS sufferers do? And if not, I wonder what makes the difference?

    As a side note, my husband has been seeing a TCM doctor (Zhengang Guo in Chicago) for about three weeks and is doing amazingly well. It's kind of hard to believe.

    Our very good internist seemed perplexed at the very notion (and expressed concern that the doctor was giving Paul speed!). We've yet to talk to the gastroenterologist about it.

    Considering TCM's strong reputation with regard to treating liver disease and the fact that drugs and surgery are counterproductive/ineffective with regard to the liver, I have a hard time understanding why MD's would remain ignorant of it or not accept an option for people who can't be helped in other ways.

    I've always thought that crimes of omission were just as bad as crimes of commission, insofar as we have taken on responsibility to a person in a particular situation....i.e. that doing nothing when we could do something is doing harm.

    I thus find it peculiar that so many doctors take such a strong stand that not only can they not do anything to help, but also that patients are being irreponsible if they look for anyone outside Western medicine protocols to try to help.

    The usual argument on the board at this point is something along the lines of "MD's are brainwashed by drug companies." This sounds too simplistic to me, and so I thought I'd ask for your insights.

    Best, Lisa

  2. Lichu3

    Lichu3 New Member

    Yes, I agree with you that it's definitely much more than MDs being influenced by drug companies. Certainly, studies show that MDs are more prone to prescribing certain conventional drugs because of exposure (advertising, dinners,etc.) to them but I don't think this is why there is skepticism/ antagonism towards non-convetional medicine.

    1. Perhaps it has to do with the education/ training that MDs go through where the scientific method (make a hypothesis, test it, analyze results, modify hypothesis according to results, retest until you find something to diagnose/ explain/ treat condition) is emphasized as the main path to truth. Non-conventional medicine also does this to some extent - through years of accumulated experience - but it's not considered the same as large clinical trials.

    2. Hearing about or having patients suffer because of alternative medicines. It's not clear that alternative medicines are more dangerous than conventional medicines
    but these stories/ experiences may stand out more in MD's minds. And the dangers of alternative medicines are less well-known or undefined (no large scale studies to look at side effects e.g.).

    Also, if there are adverse effects, MDs may end up being the ones to handle it despite not prescribing/ knowing about a medicine. My sense is that most alternative practioners do not have the 24/7/365 access that most MDs must provide through themselves or through their partners.

    3. General close-mindedness and wanting to stick to the familiar. Learning something new always takes more time and effort.

    4. Practice style and understanding patients. Some MDs are more willing to adjust their style depending on the patient. A lot of my older patients want me to make decisions for them ("you know best, doc") whereas younger patients may want to have me to give them options and make up their own minds.

    Regarding other chronic non-curable illnesses, probably more people seek alternative methods than MDs/ researchers know. On the other hand, unlike CFS, there may be less searching because even if there is no treatment, people at least have a better idea of what is causing their illness. E.g. Alzheimer's has no cure or good treatment but we know more about the biology of it and have lots of research dollars invested in it.

    I was generally fine with people using non-conventional drugs/ therapies but I made it clear to them that I had little knowledge of these methods and that the risks might not be as well-defined.

    I am glad your husband is feeling better.
  3. Slayadragon

    Slayadragon New Member

    Thanks for your great comments on this thread as well as the other one. I am heading to bed and will respond later.

    In the you know the official Chinese name used currently for CFS? I mean, not one in TCM, but the one used by modern "Western" doctors in Taiwan?

    Taiwan is obviously quite sophisticated now in terms of medicine, and so I'm sure this must be an officially recognized disease there. This is especially the case since the country has a strong relationship with Japan, where CFS (called something like Natural Killer Cell Dysfunction Disorder) has a very high profile.

    My mother-in-law (who lives in Taiwan) believes I am sick but is perplexed by the cause. If I could give her the Chinese name, she could find out lots of info on her own.

    The literal translation of "Chronic Fatigue Syndrome" definitely doesn't fly, though.


    Best, Lisa

  4. Slayadragon

    Slayadragon New Member

    I prefer that people not come on my Famvir (soon to be Valcyte) Status Report threads and tell me that they are afraid that I am going to die as a result of using the drugs.

    Otherwise, anyone who likes is welcome to comment on any thread that I write.

    Best, Lisa
  5. Slayadragon

    Slayadragon New Member

    I hadn't thought about the fact that MD's have to deal with whatever negative effects come from non-pharmaceutical treatments. (It certainly is true that "alternative" practitioners are not on call 24/7/365.) No matter how infrequently it occurred, it would be really annoying.

    My new thought on this topic is that most people with CFS actually are _not_ pursuing alternative treatments. Rather, I think that most people with CFS either a) have given up trying to find out what is wrong with them and remain undiagnosed or b) have received a diagnosis (or figured it out themselves) but believe that there is "nothing to be done" and so just deal with it.

    I know several people with CFS who fall into those categories. One is my brother; the others are along the lines of siblings of friends etc.

    Those people who actively identify themselves as having CFS and demand to their doctors that they be recognized as such are extremely unusual. Merely getting a diagnosis (or figuring out yourself what you've got) takes a lot of diligence and a fair amount of intelligence, and admitting it to doctors when you know that most of them don't "believe in it" takes a lot of chutzpah also.

    This sort of person seems to me unlikely to just accept the idea that "there's nothing we can do." Anyone who goes to that much trouble to get a diagnosis seems likely to try to figure out one their own if there's something to be done about it, especially when MD's immediately admit they have no answers.

    Whether they pursue experimental pharmaceuticals (e.g. antivirals) or "alternative" treatments depends at least on their philosophical bent. But proactive people like those who insist their doctors acknowledge that they have CFS seem pretty unlikely to accept the "do nothing" approach, especially since they realize their doctors know nothing about the disease.

    On the other hand, pretty much everybody who has liver problems and goes to the doctor on an even occasional basis knows about it. Upon finding that conventional medicine has no answers, some will seek solutions on their own, but many will give up.

    The people on this board are extremely unusual as CFS sufferers go. If the entire population of CFS patients (sometimes estimated as 1% of the population or more) were diagnosed, I would imagine that very few of them would be anything like the folks here in terms of their approach to their health.

    This is not meant to be a lecture, though. I started this post with a vague thought in mind, and that started elaborating as I went along. I don't know if I'm right or's just where I'm at right at this moment.


    Thanks much for your contributions to the board....they are very helpful.

    Did I read that you are going to see Dr. Montoya, or is it someone else at Stanford?

    I took a look at your post with your test scores and symptoms, and with one or two symptom differences I could have written it myself. Considering my experience with Famvir (as bad as many people have with Valcyte), I suspect you'll get a pretty big die-off if you go the AV route.

    The good thing is that a lot more is known now than was even six months ago (when I started AV treatment). It would be nice if you could get this dd under control soon and thus not lose more than two years of your life to it.

    Best, Lisa
  6. Mikie

    Mikie Moderator

    I'm not here much anymore but I just wanted to say that I'm glad your hubby is doing better.

    As you know, I have used a variety of treatments which, I believe, have worked together to produce some good results. The Western Medical treatments I have used have generally been used off label. The Guai, which has reversed my FMS symptoms, is an off-label use of this med.

    I do believe that those with our conditions often suffer from chronic infections and I also believe that taking the Doxycycline, Famvir, Heparin, and now the transfer factors, have been crucial to my healing.

    I've used supplements as well, namely, the probiotics, colostrum, and undenatured whey, to help build my own immune system back up.

    It's frustrating because, while I have gotten much, much better, I'm not well yet. I think all the things I have done have helped me tremendously but I believe there is more to our illnesses than what we are currently able to treat. I don't think that means that we should not try to treat ourselves with whatever helps until there is better understanding of what causes our illnesses and, hopefully, a cure or cures. For me, doing nothing just isn't an option and it has paid off.

    I think our conditions scare docs a bit because they do not understand them and there is little for them to go by. They are also scared of trying new things because there is always the threat of complaints or malpractice. I have found several docs willing to help me after I did the research and convinced them that the risks were small compared to the potential benefits. I've been very luck.

    Sorry to jump in here but I do understand what most of us go through in trying to help ourselves. Also, I want to again offer my wishes for good results for you.

    Love, Mikie
  7. Slayadragon

    Slayadragon New Member

    Hi Mikie,

    Considering the number of health issues that you have to deal with, the fact that you've made as much progress as you have is really impressive.

    Obviously you've done a lot of things right, even though you're not always feeling totally well. Thanks for continuing to visit the board on occasion and serve as such a great inspiration!

    Best, Lisa
  8. Mikie

    Mikie Moderator

    This board has been an inspiration to me and, as I often said before, every treatment I learned about, I learned about here, at least, initially.

    Each of us who posts about our experiences with various treatments expands our overall knowledge. Thanks for posting about yours.

    Love, Mikie
  9. Lichu3

    Lichu3 New Member

    Been off the board for a couple days with family visiting.

    One study following people with CFS found that about 30% were using alternative meds/supplements and about 50% of this group felt it helped them substantially.

    In terms of Chinese views of chronic fatigue syndrome, what I know is what my mom tells me. (One of my deceased uncles was a distributor of TCM meds/herbs decades ago so my mom knows about TCM through him and her own reading.) On the one hand, there is a disease in TCM (not called chronic fatigue though) that occurs with people who are not able to recover quickly after an infection and the infection is able to become firmly established in the host. However, my mom has not read/heard about good treatments for this.

    On the other hand, the articles in Hong Kong/ Asian-American newspapers (in Chinese) about CFS are mostly reflections of the American press. Good that they are making folks more aware of CFS but bad because they tend to emphasize that it affects primarily young office workers with too much stress. Treatment is mostly about reducing stress and resting.

    Secondly, the name given to what I have by two different TCM practitioners was "chronic fatigue", only translated into Chinese. It appears that there are a lot of general herbs/ tonics for this but my sense is that these are aimed more at general low energy problems and not a medical disorder. So I'm not sure if getting the name in Taiwanese or other Chinese dialect would help.

    Yes, I will be seeing Montoya in May.
  10. Slayadragon

    Slayadragon New Member

    Thanks. Good luck with Montoya!

    Best, Lisa