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Are we wasting our time on traditional medicine ?

Discussion in 'ME/CFS Doctors' started by xchocoholic, Dec 27, 2011.

  1. xchocoholic

    xchocoholic Senior Member

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    Hi All,

    Imho, based on what we've seen from traditional medicine, we're wasting our precious
    time waiting for them to come up with a cause or cure for ME/CFS.

    I've yet to read anything other than speculations from this group. I suspect that's because
    there is money in medical research and if anyone actualy solves this, that money would dry up.

    I've been seeing an integative doctor for several years now and she's helped me tremendously
    by running the RIGHT tests. In my 19 years of seeing traditional doctors for my disabling me/cfs all I got was sarcasm and a feeling of hopelessness. What really pisses me off is that some of the tests my new doctor has ordered have been traditional tests. Really ? How the hell did this happen ?

    I'm still working on my dysautonomia but my other symptoms
    are under control via rest, diet and supplements. I was very sick 24/7 before.

    I'm NOT saying traditional medicine doesn't have it's benefits, just that we pwcs are wasting our
    precious time. I missed out on my daughter's childhood and now that I'm feeling mostly healthy I consider my years lost to my trust in traditional medicine a crime. I was robbed ..

    I'm not an argumentative person, but this has been on my mind for awhile now and I needed to say it. So please do not attack me for saying what I beleve in my heart to be true.

    Hope everyone has a good holiday. Tc .. X
    chasmyn, CJB, justinreilly and 3 others like this.
  2. Esther12

    Esther12 Senior Member

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    A lot of 'traditional medicine''s approach to CFS has done more harm than good imo.

    I guess that could mean that 'alternative medicine' could be preferable - but still not worth spending money on imo.

    It doesn't greatly surprise me that the British royal family is particularly keen on homeopathy, when they're likely to have been exposed to the most pro-interventionist aspects of mainstream medicine. Doctors of all ilk are keen to show their worth and earn their money, even when there's nothing particularly worth doing (Esther Crawley's recent claim that PACE showed a recovery rate of 30-40% for CBT and GET was in a paper aimed at NHS commissioners,) so sometimes it's better to use 'medicine' that does nothing.

    It's possible that you're using an alternative practitioner who is also using mainstream medicine with greater care than your past doctors, but generally, 'alternative medicine' is only alternative because there's no evidence that it works. When it does, eg ginger for nausea, it should become a part of mainstream medicine (although there are problems here stopping things from being as simple and effective as they should be, with the failings of mainstream medicine, institutional biases, etc, etc).

    It's also possible that your practitioner was able to give sensible and useful advice on energy management, without being caught up in the mainstream quackery that surrounds CFS.

    With CFS, the distinction between 'alternative' and 'mainstream' medicine is less stark than with most other conditions.
    wdb likes this.
  3. Calathea

    Calathea Darkness therapy

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    No one has a magic cure for ME. If they did, we wouldn't need this forum. Long-term, I think conventional medicine will have the best hope of finding a good cure for ME, and of seeing it through with proper testing. It's being held up by lack of research and political problems, rather than conventional medicine being essentially useless. The vast majority of effective healthcare on this planet is conventional medicine, after all. I think it's unlikely that alternative therapies will come up with an actual cure.

    Until that happens, we're looking at various things which may or may not help for a certain number of people, and generally we're talking about symptom management rather than an actual cure. Some of these things will be from conventional medicine, some will be from alternative medicine, and most people have to go through an incredible amount of things before they find something that works even a tiny amount. You feel angry because you've been ill for years and conventional medicine hasn't healed you yet: fair enough, there are still plenty of lousy doctors with regard to ME and the lack of research is shocking. I feel pretty irritated with the amount of time, energy and above all money that I've poured down the drain with alternative therapies, almost all of which had little to no discernible benefit. I've seen both good and bad practitioners in both fields, and a sympathetic approach does not necessarily mean that they will be able to help me. When I find a good doctor or a treatment that actually does something for me, I hang onto it for dear life because it's so rare.
    wdb likes this.
  4. Dreambirdie

    Dreambirdie work in progress

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    Hi xchocoholic--

    I am with you on this, and totally understand your anger about it. The only thing that standard allopathic medicine has offered me is verbal abuse and further damage to my already fragile health. Most of my major relapses were caused by BAD MEDICAL ADVICE and WRONG TREATMENTS. I am currently recovering from the latest of these, which was happened back in 2009.

    My least harmful and most helpful treatments have been TCM, acupuncture and assorted supplements. I now avoid doctors at all costs. The risk to my life and health is far too great.
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Doctors save lives all the time. I have had surgeries I had to have and I am so grateful. But for CFS and POTS, I only use my Integrative MD. I have improved so much and it is wonderful to feel good again. Complimentary med. is best. Best of both worlds. Supplements and blood tests that only integrative MD's know about for some reason are a great thing.

    There are many, many things that work in "alternative" med. For instance, my neuropathy is almost completely healed with Alpha Lipoic Acid and Benfotiamine. (Like vit. B1)

    If you have a good integrative doctor, you find out quickly how much better you can be.
    justinreilly and xchocoholic like this.
  6. svetoslav80

    svetoslav80 Senior Member

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    Maybe, but as there are so many disorders which are actually cured by traditional medicine, we can suppose that's not always the case. And those who finds treatment/cure for CFS definitely will make lots of money - maybe more than he gets from researching.

    Otherwise, hoping that they will find a cure soon is probably a waste of time yes. That's why I don't hope. I just help the CFS community to gain publicity, so that even if they don't find cure I know I've done a lot. But if someone ever finds a cure/treatment, I bet it will be traditional medicine.
    Waverunner, justinreilly and wdb like this.
  7. xchocoholic

    xchocoholic Senior Member

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    Thanks for replying .. It's interesting to read others thoughts on this. My main doctor is an integrative
    doctor who spent a few years practing traditional medicine before concluding that she could help her patients more if she was up on alternative treatments too. I do see traditional doctors for my specialized problems still so I appreciate their value. I just never had any luck with my me/cfs treatments until now.

    Other mds I know of who've converted to integarative medicine are dr oz, dr mark hyman, dr wahls and dr perlmutter ..

    I have company in town still so I'll have to wait to respond individually when things quiet down. I know ya'll know where I'm coming from .. Holidays are exhausting .. Tc .. X
    justinreilly likes this.
  8. aprilk1869

    aprilk1869 Senior Member

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    I'm confused by this thread. Do you really mean traditional medicine? It's just another name for alternative medicine. Here is the definition by WHO.

  9. madietodd

    madietodd Senior Member

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    For me, it's not a waste of time. Yes, I've spent gobs of money and heaps of time on traditional western MDs and many types of 'alternative' treatments. But when i got sick 25 years ago, nobody had any idea what this was. I was lucky to find some kind doctors, but they couldn't actually help any more than the irritated ones.

    I see my CFS like a jigsaw puzzle. Maybe one day researchers will show me the finished picture and offer a cure. In the meantime, I work on the puzzle in subsections. If I find a good doctor, I add that to my team. If I hear about a diet or regime of supplements that resonates, I try it out. I've got some areas of the puzzle filled in now (fuzzy brain went away, I no longer have to lay on my bed during the day).

    Hope is a big part of my toolkit. My current hope is to get my memory back. That keeps me motivated to stick with the anti-candida program, take all my targeted supplements, and keep my diet ridiculously "clean."

    I'm seeing a naturopath at the moment. My mom thinks naturopaths are scam artists by definition (not MDs, pretending to do medicine). I find him to be the first medical professional to help me in 10 years (Got me well enough to drive to my mom's house. Oh the irony!). I would never have found him if I'd stopped being open to trying new things.
    justinreilly likes this.
  10. justy

    justy Senior Member

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    I hear that people feel that standard medicine has cured many people of many things - im not sure this is entirely true, especially for chronic conditions such as asthma, lung fibrosis, endometriosis (all of whihc i have) It IS good for surgery and broken bones, but round here they have no idea wht to do with you unless you have a limb hanging off - then the NHS is great. I also had a heart op as a child and am grateful for that, but when it comes to chronic illness they dont know what they are doing. No cure for parkinsons, MS, alzheimers, diabetes etc, they can control some of these illnesses with drugs - drugs which in my experience can make you more ill.
    For me i have had the best help with a medical herbalist and an integrative GP (medically trained, but looking at her patients more holistically)
    Just my twopence worth - ive got family and friends here too - exhausting but nice too!
    justinreilly likes this.
  11. Mya Symons

    Mya Symons Mya Symons

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    I have been thinking about this a lot lately. My husband has had such good results using Saw Palmetto, Rooibos, Pygeum Bark and various polyphenols for BPH (prostate inflammation) that I want to give alternative medicine a try. However, I don't think I could afford a Naturopath so I would have to get the herbs and supplements online.

    I don't think it is true that alternative medicine has not been proven to work. Many herbs have been proven to work. For example, green tea polyphenols have been proven to prevent prostate cancer by studies you can find on Google scholar. The only medicine the Native Americans had came from plants and animals. Many of them lived well up into their 70's while the settlers many times did not live past 30 (not including those who died of diseases like small pox brought be the settlers).

    I have been doing some research online and I would like to try using cotton root to block estrogen production (this was also proven to work by a scientific study). However, I can't find any organic tincture without alcohol. Since cotton is not made for food, the level of pesticides used is really high in nonorganic cotton and only one supplier sells organic cotton root. They use alcohol. I am still looking.

    I am tired of waiting for mainstream medicine to come up with solutions. Even if I have to be my own human guinea pig, I am going to start trying various herbs to see if they help. I figure there is not much to loose.
    justinreilly likes this.
  12. xchocoholic

    xchocoholic Senior Member

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    Thank you all very much for the thought provoking replies. I appreciate everyone from refraining from sounding harsh.

    I wrote a long post but lost it so quickly .. I think the problem is that many medical professionals
    both traditional and alternative aren't looking at treating chronic illnesses from a logical standpoint.
    Meaning, we have to remove all the possible obvious biological problems, toxins, parasites bad bacteria, nutritional deficiencies, etc so we can see what's left.

    The current definition of me/cfs and those treating us under that premise is too inclusive. Many pwcs
    will regain their health by addressing what's already been proven to cause fatigue. These are
    leaky gut, food intolerances, candida, toxins of all kinds, mold included, nutritional deficiencies, etc.

    Gotta rest. I'm treating for h pylori right now and it's kicking my arse .. :In bed: .. X
  13. svetoslav80

    svetoslav80 Senior Member

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    Can these disorders which you list be cured, or at least treated better by any other medicine?
  14. xchocoholic

    xchocoholic Senior Member

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    Hi sv,

    I know you had another thread here on traditional medicine because I read a few of
    the replies but based on the few replies I read this has been explained to you.

    Many of us have been through the traditional route, 19 years for me, and all I got were
    meds, surgery, sarcassm and a feeling of hopelessness. My reaction to changing
    my diet and using some supplements and seeing an integrative doctor has changed
    my life for the better. Sure, I still have some issues but being disabled for 22 years
    will be hard to reverse. My body has had time to alter many chemical reactions and
    it's had to deal with organ damage. But, I had ataxia for 16 1/2 years and that resolved
    5 years ago, so I'm hopeful.

    Tc .. X

    Ps. The two ss's in sarcasm was intentional ..
  15. Dreambirdie

    Dreambirdie work in progress

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    LOL... Yes, I bet it was!
    xchocoholic likes this.
  16. xchocoholic

    xchocoholic Senior Member

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    Lol .. yeah, i couln't resist.

    I was thinking about this and realized that if a virus or bacteria is the root cause
    of me/cfs, this info will have to come from traditional testing because that's who
    has the labs for this. They may even come up with a single cure at some point.

    HOWEVER .. The treatments they're currently recommending aren't helping us or them discover a cure
    or cause. They're masking or ignoring our symptoms instead of whittling them down to see
    what's left.

    So, imho, the current treatments need to be patient specific once the obvious possible culprits
    are eliminated.

    So we're both right .. Lol

    Have a great new year's everyone .. Tc .. X
  17. taniaaust1

    taniaaust1 Senior Member

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    Im feeling frustrated too about all that. I had a vent today on my thread about it and my old CFS specialist. I believe I could of been helped more as I know many here are.

    The most valuable doctor be it a someone in an alternative field or normal medical field, is one who listens to the individual and actually "hears" what they are saying then does their best to experiementally trial things in view of what that person said about their symptoms etc
    madietodd likes this.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Obviously traditional medicine (in the US, this means western allopathic medicine) has been an incredibly destructive force to people with ME (and at least according to reading I have done, to people with some other diseases). The main help I have gotten is from alternative treatments. I spent an incredible amount of money on it and it cumulatively made me substantially better, but no where near cured. And I relapsed somewhat when I ran out of money.

    If we can somehow get normal funding for this disease and boot out the sociopathic doctors trying to dominate the 'debate' with lies then I think we will get some very effective treatments, perhaps a cure.

    Esther, I really must disagree with you. There are plenty of cheap, natural, nonharmful treatments that are proven to work in alternative medicine that have been resisted and ignored by western medicine to the tremendous detriment of human health.
    markmc20001 and CJB like this.
  19. markmc20001

    markmc20001 Guest

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    Been working on trying to post here for a half an hour and figured out I don't have much to say, other than I agree with what many here have already said!

    and of course, Watch out for the medical industrial complex propaganda!

    I think being in a support group is important, and need to make more effort to show up to meetings and help each other.

    I'm actually a nicer guy in person when I don't always say what i really think!

    I just come here to mess with the extraterrestrials.
    Waverunner likes this.
  20. SaraM

    SaraM Senior Member

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    Hi Xchoco, I am eager to know what helped you with your Ataxia. I sent you a PM for this.

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