Lyme disease, science, and society: Camp Other

Wednesday, June 22, 2011

16 Comments On the Huffington Post - Dr. Leo Galland

I didn't want Dr. Galland's recent efforts to go unnoticed at the Huffington Post, so I posted him a little comment:

"Dr. Galland,

Thank you for an informativ­e post that outlines some of the symptoms of Lyme disease as well as facts about its transmissi­on and difficulti­es in testing for it. I really appreciate­, too, that you have offered a list of citations for people to read to get more informatio­n.

I've had persisting symptoms related to LD and other coinfectio­ns. Looking back on it, I can't help but think that my current situation could have been avoided had the first doctor who had seen me recognized my EM for what it was and given me enough antibiotic­s right there on the spot. Instead I was told there is no Lyme disease in the area where I was bitten and my saved tick was tossed.

If doctors aren't even following the IDSA Lyme disease guidelines for early textbook infections in patients at a bare minimum, patients are getting underdiagn­osed and then end up becoming part of the controvers­y that is chronic Lyme disease.

This doctor on Blogger (My Lyme Disease Story) is getting treated for Lyme disease - she understand­s the patients' fight to get well. She had little training on Lyme disease in med school and wasn't advised on its dx in daily practice. If tests aren't that accurate early on, then doctors must rely on a clinical diagnosis to treat the patient properly. How does one ensure this happens so that people do not have to go through what I and others have been through?"

That is not the comment I wanted to post, though. It is a highly reduced and edited one in comparison to what I intended - even though it gets the gist across.

In the process of posting comments, I learned that the Huffington Post has a 250 word comment limit - something I wasn't expecting, and I had to cut an additional 300 words from my post and separate it into a different comment. Two hours later, and my other comment has yet to be posted. It read:

"On another note, in general: I really would appreciate it if the media began discussing the pathogenesis of Lyme disease and we began raising the bar on how Lyme disease is covered as a topic. We need more scientific research, and for research that's already out there to be discussed in the media. We need more intelligent discourse that goes beyond, "the IDSA Lyme guidelines panel is an authoritative voice in this argument" vs. "the doctors who treat this condition, chronic Lyme, are wrong".

It's an oversimplification of what's going on and sets up a situation that readily polarizes the audience. There is so much going on that most newspaper articles only just begin to scratch the surface.

I have been devoting a fair chunk of my time in writing a blog about these issues and discussing research on Lyme disease and other tickborne diseases - as well as microbiology in general. I would love to see more efforts online to get the word out about what is known and not known about tickborne diseases from a scientific perspective."
I commented on a few other posts made there, and I could comment more to individual people - but I think next up I want to leave comments on Dan Rodrick's op-ed piece.

I wish I knew in advance when Lyme disease related articles were going to be posted to major news outlets so I could read them and comment sooner. Maybe I need some sort of daily script I can run that looks for key words... that would probably help.

16 comments:

  1. Dr Leo Galland posted on his web site http://www.mdheal.org/

    Start excerpt:

    Integrated Medicine embraces the best of conventional and alternative approaches, but is more than just a mixture of therapeutic techniques.

    To integrate is to make whole, and the distinctive feature of Integrated Medicine is its application of science to prevent or treat disease by healing the person who is sick, rather than just treating the disease.

    Integrated Medicine perceives illness biographically and at the same time uses the powerful data-base of modern biological and behavioral science to help describe the varied disharmonies which undermine the health of each individual.

    These disturbances originate, almost entirely, with dietary, environmental or social conditions. Although the media are full of stories about "cancer genes", for example, the scientific evidence is that almost all cancer is environmentally induced. When identical twins are reared in separate environments, the rate at which each twin develops cancer is comparable to the cancer rate in the adoptive family, not the biological family.

    The publicity accorded to "cancer genes" serves to cripple individual and social initiatives at cancer prevention and to displace scrutiny from cancer's environmental and dietary triggers.

    Integrated Medicine exists to empower people to improve their health by improving their four pillars of healing: interpersonal relationships, diet and lifestyle, environment, and the innate system of detoxification and repair.

    End excerpt.

    That sounds SO familiar. Where have I read similar exhortations before? Oh, yeah---- probably at many of the forums that ignore science in favor of a blend of woo, wishful thinking, selling and a dash of truth.

    Too bad it doesn't always work, but hey---A for effort, right?

    I'd especially like to thank Dr. Leo Galland for his tutorial on what the word 'integrated' means. I probably couldn't have figured that out myself.

    Mwah!

    ReplyDelete
  2. cave76,

    Thanks for pointing this out to me. I hadn't checked out Dr. Galland's web site yet - at least not the link mentioned above, though I did check out the other site that links to the book mentioned in his article - Pill Advised. Pill Advised looks like it's written for children not adults - and I was considering writing about that in my previous post about Dr. Galland's article but didn't... The thought being that I don't want to see this disease and its treatment "dumbed down" and want to see more detailed explanations supporting treatment decisions. Even if they are only speculative, more supportive evidence for those decisions would be appreciated.

    I didn't go to Dr. Galland's site or comment on Pill Advised because I really just wanted to focus my article on the content that was there and how some of the media continues to publish pieces on Lyme disease which are more likely to polarize the audience to increase ratings and fails to publish pieces on the science itself and scientific controversies within Lyme disease. The more I've looked at the research, the more I'm beginning to think the controversies in research are borne out of speculation and not knowing the answer rather than being certain. To me, that's not even really controversy - that's how science is. So it's funny.

    Regarding the material on his own site... I have yet to look at it, but will in a moment. Is he making claims without backing them here, on this statement?: " When identical twins are reared in separate environments, the rate at which each twin develops cancer is comparable to the cancer rate in the adoptive family, not the biological family."

    or

    "The publicity accorded to "cancer genes" serves to cripple individual and social initiatives at cancer prevention and to displace scrutiny from cancer's environmental and dietary triggers."

    Again, does he provide evidence to support this position, or does it just "sound reasonable" to others?

    You said,

    "That sounds SO familiar. Where have I read similar exhortations before? Oh, yeah---- probably at many of the forums that ignore science in favor of a blend of woo, wishful thinking, selling and a dash of truth."

    I don't have a problem with someone suggesting to others that they lower stress, get out of shitty relationships, improve their diet, and get some exercise - these are all good ideas and common sense. If a doctor encourages anyone to do such things, I support the positive reinforcement.

    That said, I think one has to provide evidence to support their claims about process x leading to outcome y and not just rely on testimony - at the very least, keep detailed case studies and work towards a larger study or trial.

    You said,

    "Too bad it doesn't always work, but hey---A for effort, right?"

    Um, no. In my book, one gets an "A" for encouraging people to adopt a healthy lifestyle - that's a good idea for anyone. But they get an "F" for making a number of claims they can't support. I guess that if one were to average those out, the result would be a "C" grade?

    It's disappointing to get this feedback about Dr. Galland. In and of itself, his article had a lot of truth in it and his clinical experience with Lyme disease reflects what is known about the disease and how it behaves in the human host. Knowing that when you look past that there is less science behind statements made is disheartening, indeed.

    You said,

    "Mwah!"

    Um. I didn't know you cared?

    I'll take that as a mock mwah for now, not knowing how else to take it.

    ReplyDelete
  3. CO
    To clarify, for you and maybe some other readers here, almost everything I say is 'mock'--- but I prefer 'snarky'. It's the only way I can stay mostly sane.

    ReplyDelete
  4. Found this on another blog and hoo boy---- this should be de rigueur on all blogs. And yes, this is snarky.

    Please use the comments to demonstrate your own ignorance, unfamiliarity with empirical data, ability to repeat discredited memes, and lack of respect for scientific knowledge.

    Also, be sure to create straw men and argue against things I have neither said nor even implied.

    Any irrelevancies you can mention will also be appreciated. Lastly, kindly forgo all civility in your discourse . . . you are, after all, anonymous.

    ReplyDelete
  5. cave76,

    Well, that's getting to the point now, isn't it?

    Thanks for the laugh.

    ReplyDelete
  6. "Maybe I need some sort of daily script I can run that looks for key words"

    Do you use Google Alerts?

    -Anonymous

    ReplyDelete
  7. Anonymous,

    No, I haven't - but I will check it out. Thanks for the tip.

    ReplyDelete
  8. Hey cave76,

    I was wondering how much you poked around Dr. Galland's web site beyond the page where he mentioned those claims about cancer...

    What did you think of these pages which provided citations?

    H1N1 flu treatment and research

    and

    Lyme disease and drug and supplement interactions

    I thought some of the information there was useful, and am going to look at the studies he referenced.

    ReplyDelete
  9. CO, yes, as usual, some of the information is useful. Maybe not all? Which is very common but makes swallowing his 'medicine' in toto difficult.

    Swine flu:
    *****Of course none of these supplements are guaranteed to prevent swine flu or any other illness.******

    But I use elderberry syrup when I think I may be getting a cold. (Didn't work on this last (and first in years) one though. But Galland DID say none of these supplements are guaranteed to prevent swine flu or any other illness----- so he's right. (grin)

    From India where we can probably assume that the sanitation and medical efforts there aren't up to American standards:

    Friday, June 24, 2011
    Karachi
    As many as 49 people have died so far due to H1N1 Influenza, commonly known as swine flu, since 2009.
    *********************************
    "It's flu, it happens every winter and every winter people die, but you lot just have to make it seem like the apocalypse is just around the corner every time."

    That led some critics to suggest WHO's declaration of a pandemic was the result of collusion with pharmaceutical companies, who made millions selling vaccines worldwide.
    *******************************
    Galland relied on WHO's reports about the swine flu.
    I would suggest that no one rely on ANY one agency's report but spend a LOT of time reading. Impossible, if you're trying to run a business, so-----should we say 'no harm, no foul' about Galland's article?
    From
    http://www.physorg.com/news/2011-03-response-swine-flu-pandemic-flawed.html

    Those suspicions were spearheaded by groups including the Council of Europe and the medical journal BMJ, who accused WHO of relying on doctors with ties to drug companies. WHO denied pharmaceutical interests swayed their decisions but acknowledged they could have handled the outbreak better. The agency said any potential conflicts of interests were properly disclosed.

    During the swine flu outbreak, WHO said declaring a pandemic was based exclusively on the virus' spread, not on its severity.

    In the expert report, scientists said WHO should also have considered how serious swine flu was in its definition.

    The report also noted the agency altered some of its online pandemic documents without notice or explanation, inviting suspicion.


    I especially would like to point to 'not on its severity' phrase above. Bingo!

    ReplyDelete
  10. cave76,

    You said,

    "yes, as usual, some of the information is useful. Maybe not all? Which is very common but makes swallowing his 'medicine' in toto difficult."

    Is there anyone out there you know of who you would say is consistently applying sound scientific research for their use of alternative medicine - as well as relying on conventional medicine where it is warranted?

    If you're willing to try elderberry syrup to fend off a cold - whether it works or not - then you must think at least trying some alternative, natural medicine is worth it. What's your take on this?

    At this point, I am going to end up trying the elderberry syrup anyway because my doctor told me to stop taking Tamiflu last time due to the side effects it gave me. Between an LLMD and a pharmacist advising me not to get a flu shot and my primary care physician telling me not to take Tamiflu, elderberrry syrup and huge amounts of garlic is all I have left... I don't even know that I care whether or not the garlic works as an antiviral - all I know is it keeps sick people away from me!

    "It's flu, it happens every winter and every winter people die, but you lot just have to make it seem like the apocalypse is just around the corner every time."

    Well, this is the truth. No matter what antivirals we have in our medicine chest, people still die of the flu. My understanding of how H1N1 was different from previous, more recent flus: 1) it had higher mortality rates for healthy young-middle aged people when flu typically hits the immune deficient (cancer patients, others) and elderly the hardest, and 2) it led to more immediate cases of viral pneumonia/cytokine storms than other flus - which led to rapid decline compared to other flus.

    All flus run the risk of secondary complications including bacterial pneumonia - and it is that which usually raises mortality rates. When it's viral pneumonia/cytokine storm, though - we don't even really have a method of handling that well. It's mostly supportive and comfort care.

    That said, this flu was stated as being as worse in severity overall as I saw it being discussed in the media - and not only the general media, but on web sites where I know most people weren't looking, such as nurses' discussion fora where they were discussing cases early on and surprised at how rapidly the virus affected some people.

    So, I'm not sure (from my personal observation) how to compare this flu against previous ones.

    I will say, though, that what you state above - if true - does make it look suspicious that the WHO was up to something. Altering online pandemic documents without notice or explanation is not a small deal. It's something they should have mentioned with a note as to why the pages were amended to reflect new research and surveillance reports.

    I wouldn't hold it against Dr. Galland for on relying on the WHO's report, as historically one would think the WHO is a pretty reliable source of health information globally - a lot of doctors have relied on it. If the WHO did in fact deliberately lead everyone to assuming the H1N1 pandemic was more severe than it actually was - versus how widespread - that's a serious charge.

    Do we begin investigating the WHO in relation to other reports it makes now, too? Where does this end?

    ReplyDelete
  11. ****Where does this end?****

    It doesn't.

    ****If you're willing to try elderberry syrup to fend off a cold - whether it works or not - then you must think at least trying some alternative, natural medicine is worth it. What's your take on this?****

    My take is----- it tastes good and it MIGHT work. And I didn't have to use an enema bag to dispense it.

    ReplyDelete
  12. cave76,

    You said,

    "y take is----- it tastes good and it MIGHT work."

    And pets like to lick up antifreeze in the driveway and it tastes sweet, but it isn't good for them.

    Then again, they aren't trying to get something to work. They are just thirsty.

    My point is that just because something tastes good doesn't mean it is. Botulism is not detectable by taste if I recall correctly and yet it will do a number on you if consumed.

    "And I didn't have to use an enema bag to dispense it."

    That might be a stronger selling point for me.

    ReplyDelete
  13. cave76,

    I'm still hoping to get an answer from you on this one, because I'm really curious:

    Is there anyone out there you know of who you would say is consistently applying sound scientific research for their use of alternative medicine - as well as relying on conventional medicine where it is warranted?

    ReplyDelete
  14. ****My point is that just because something tastes good doesn't mean it is.****

    Gee, ya think? (grin)

    ****Is there anyone out there you know of who you would say is consistently applying sound scientific research for their use of alternative medicine ****

    I'm eagerly awaiting this answer also. Been waiting. Still waiting. Sorry to not be of help.

    ReplyDelete
  15. Dr Leo Galland's tests and treatments include saliva testing, hair samples (all detox stuff), seems to have faith in mercury toxicity from amalgams (even in a person with NO amalgams). Test 'kits' cost $100.00.

    ReplyDelete
  16. cave76,

    Some of these kinds of tests are scientifically supported, and some of them are not. It depends on what you are testing for - I need more information. But I found what you included here particularly concerning:

    You wrote,

    "seems to have faith in mercury toxicity from amalgams (even in a person with NO amalgams). "

    That doesn't make any sense at all.

    "Test 'kits' cost $100.00."

    What justifies this price? How are the tests processed, and can they only be purchased through the doctor's office or can they be purchased independently? Are they all effective tests or are only a portion of them effective? Need more information, but the testing for mercury does not sound scientifically sound based on your comment.

    ReplyDelete

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