The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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2007 Interview with Dr Burgdorfer - things you may not have heard about Lyme history

Discussion in 'Lyme Disease and Co-Infections' started by roxie60, Oct 11, 2014.

  1. roxie60

    roxie60 Senior Member

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  2. roxie60

    roxie60 Senior Member

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    Some extracted paragraphs

    February 28, 2007, the UNDER OUR SKIN film crew interviewed Willy Burgdorfer, Ph.D., M.D., and Scientist Emeritus at the National Institutes of Health (NIH), for three hours at his home in Hamilton, Montana. Dr. Burgdorfer is the discoverer and namesake of the spirochete (a type of bacterium) that causes Lyme disease, called Borrelia burgdorferi.

    Just as we began filming, there was a pounding on the door, and we found ourselves facing someone who turned out to be a top researcher at the nearby Rocky Mountain Laboratories, a biolevel-4 NIH research facility. Standing on the porch, our uninvited guest said, “I’ve been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can’t talk about.” We were stunned. After all, Dr. Burgdorfer had been retired from the lab since 1986. We were there to talk to a private citizen, about the history of a very public discovery that had put him on the short list for a Nobel Prize. Earlier that year, the NIH had refused our requests to interview any of their Lyme researchers. What was going on? Why would the NIH want to censor information about the fastest growing bug-borne disease in the United States? Fortunately, our iron-willed film director, Andy Abrahams Wilson, turned the NIH handler away, and what followed was an amazingly candid interview about Lyme disease—its dangers and its controversies.

    Andy Wilson: What are the similarities between Borrelia burgdorferi and syphilis? Dr. Burgdorfer: The similarities that I know of are associated with the infection of the brain, the nervous system. The syphilis spirochete, Treponema pallidum has an affinity for nerve tissues. The Borrelia burgdorferi spirochete very likely has that too. Children are especially sensitive toBorrelia burgdorferi The Lyme disease spirochete is far more virulent than syphilis. We don’t know the end yet. And [we] can’t even make a [blood] smear with Borrelia burgdorferi and see the organism. It’s there. But you don’t see it. You cannot find this spirochete. Why not? After all, I have a sick person here. He is trembling all over. His synovial fluid is full of spirochetes. But when it comes to blood, it’s not there. So there is something associated with this organism that makes it different.

    t.Andy Wilson: Why is Borrelia burgdorferi so hard to find in the body and culture outside the body?Dr. Burgdorfer: Borrelia burgdorferi in the tissues of a patient is extremely difficult to demonstrate, because, first of all, you don’t like somebody to take samples out of your brain [to look] for spirochetes. The same with other tissues. Every system in your body can be infected with spirochete. But to prove that is extremely difficult.

    Andy Wilson: Are you a believer in the idea of persistent Lyme infections? Dr. Burgdorfer: I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients.

    Andy Wilson: How do you feel about the controversy in the Lyme world? Dr. Burgdorfer: The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing.

    There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”
     
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  3. Tired of being sick

    Tired of being sick Senior Member

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  4. duncan

    duncan Senior Member

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    And, of course, ironically he was diagnosed with Lyme, and when the news of that hit the press, the diagnosis was reportedly, er, rescinded. I THINK I am remembering that correctly...

    His point about persistence after treatment was brought home by Dr. Stephen Barthold when Barthold demonstrated in autopsies of Bb-infected mice that the spirochete could be found in tissue post-treatment.

    Even better, there is the Ember's et al study, which is a saga unto itself, but which demonstrated persistence post-treatment in monkeys.
     
    Last edited: Oct 12, 2014
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  5. jimells

    jimells Senior Member

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    Interesting article, thanks for posting the link. Too bad they sent the minder away. It would've been very interesting to find out just what topics were forbidden. So many times I have found that what is not said is more important than what is said.
     
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  6. anciendaze

    anciendaze Senior Member

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    Just in case people reading this get the idea there is no evidence of persistent spirochete infections in humans, other than syphilis, here is a review paper on the hypothesis that Alzheimer's is caused by infection by spirochetes. Spirochetes are found at autopsy in a surprising number of cases, just not always borrelia burghdorferi.

    There are two likely interpretations: 1) in chronic infectious disease, the convenient single infectious agent assumption breaks down; 2) Alzheimer's involves a collapse of immune function which allows multiple infectious agents, previously held latent, to emerge.

    One more comment on that interview: it took place before recent evidence that borrelia miyamotoi does infect humans in the U.S. who have not traveled outside the country. This spirochete is classified as a cause of relapsing fever, on which Burghdorfer is an acknowledged expert. This not only widens the range of borrelia spirochetes causing disease in the U.S., it also widens the range of diagnostic classifications caused by borrelia in the U.S. This makes the reliance on a test based on a single strain of one species isolated from a tick, not a patient, particularly absurd.

    Claims that the test is adequate because several of these cases of borrelia miyamotoi infection did turn up positive, on a test designed for borrelia burghdorferi, ignores the question of how you would know a patient was infected if that test had been negative. If available evidence can only provide positive support for a popular hypothesis, but never show results which weaken the hypothesis, you have a classic self-fulfilling prophecy. Scientists and public health officials are supposed to know better, (assuming they want to use their expensive educations and experience in this situation.)

    Clinical interpretation of existing tests is also a problem. We have patients right here on this forum who were told they did not have Lyme when a reanalysis of the actual laboratory report showed the test on which this was based had, in fact, been positive. The rate of false negatives of the current official test is sufficiently high so that you can't have a strong assurance of a true negative without repeated testing. By the time you get enough tests to yield confidence of a valid negative you have raised the rate of false positives to the point it cannot be excluded. The result is that a good bit of expensive laboratory work becomes little more than a test of the doctor's opinion.

    Don't take my word for this, consider what happens if what I've said is true. This creates a situation in which some doctors seldom, if ever, see a positive case, while others see cases in almost every patient. Opinion reigns supreme, and laboratory tests play a supporting role. Nothing is settled, except that the patient, or the patient's insurance, pays a great deal for these opinions. Sound at all familiar?
     
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  7. duncan

    duncan Senior Member

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    Yes, and it isn't just Judith Miklossy maintaining spirochetes are implicated in Alzheimers and other neurodegenerative diseases. Alan MacDonald posited similarly, although he was Bb specific I believe, whereas Miklossy holds other spirochetes may be at play in addition to Borrelia.

    If anyone wants to see how the CDC two-tier testing (ELISA 1st, then WB if ELISA positive)assurances of virtual infallibility have morphed in recent years, all that is needed is to look at how many IDSA stalwarts are now throwing their weight behind the C6 Peptide test, and the logic required to rationalize that support.

    Other recommended readings: patent records for all the major Bb tests.
     
  8. Tired of being sick

    Tired of being sick Senior Member

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    In case none of you saw the "Under Our Skin" documentary,you can watch it here for free..

    For the fact the majority of us have not a pot to piss in..


     
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  9. Tired of being sick

    Tired of being sick Senior Member

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    From Dr.Alan B. MacDonald MD FCAP
    Speaking June 7th of this year in London England
    Autopsy Evidence based Medicine For Chronic Borreliosi
    In English this is Chronic Lyme




    You might remember Dr. MacDonald from the 2007 "under our skin" documentary..If not you can

    Watch video in post above this one starting at 43:07 where Dr. MacDonald
    stated that Borrelia burgdorferi the Lyme Disease spirochete
    was found in MS/ALS/Parkinson's/Alzheimer's
     
  10. roxie60

    roxie60 Senior Member

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    Dr McDonald has been such a fighter trying to get his fellow scientists and doctors to listen to the science. Few know that dr mcdonald also got mysteriously sick, had to give up research and his equipment soon after the first movie was made. By the grace of god he has miraculously recovered and is back fighting for lyme patients and many other misdiagnosed. He was given a terminal diagnosis. Im not sure it has been proven he somehow vontracted lyme but I think he was working with a dr that suspected it. Just grateful he is back in the trenches and that hecrecovered. So he knows even more personally now the fear and loses so many of us have endured.
     
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  11. jimells

    jimells Senior Member

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    ...and the patient continues to suffer as the "professionals" all go home for the day.
     
  12. Tired of being sick

    Tired of being sick Senior Member

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    The reason Dr.'s are closed minded with rare controversial "chronic"sickness like Lyme is because they are more concerned of what their peers might think of them than actually facing reality and helping the patient.
    This behavior is called Cognitive Dissonance, Avoidance, Denial, & Rationalization.

    Here is a perfect example of said above, what I'm going through with my recent diagnosis of POTS.

    Because of one visit to a vascular surgeon, one visit to a Cardiovascular Disease specialist and visit to the ER. An entire team of four Cardiovascular Disease specialists during my over night stay at the hospital, looking incompetent at best.

    1st the vascular surgeon:
    During my appointment I came loaded with undeniable information of results of a Doppler sonar of my right leg femoral artery (done in ER checking for blood clots) showing a Monophasic waveform of blood flow(meaning my leg is only receiving around 33% of the total blood supply) and my self conducted poor man's tilt table test which was positive for POTS..

    He said and I quote "I am just a plumber. I only fix the plumbing of the circulatory system"
    Well this much I knew.
    I then said,
    Whats up with the monophasic blood flow in my leg?
    He said,
    "Oh, no need to worry,you just have a kink in your hose"
    I said,
    I need a doctor who can diagnose POTS
    He said jokingly,
    "You need to play the lottery man LOL"
    Then,he set me up with Cardiovascular Disease specialist.

    So I saw the Cardiovascular Disease specialist. armed with the above info and I told him that my heart rate climbs as high as 166 bpm from minimal exertion such as taking a shower.He looked at me with disbelief and said "how do you know your bpm goes this high" I said simple,I have a blood pressure/Pulse device at home..

    I then asked,do you know what POTS is?He said yes.Then I said it can be diagnosed with a Tilt Table test.
    Then he said "I can tell you right now that you definitely do not need a tilt table test".
    At this point I knew that he had not one clue of what POTS was..
    So he ordered an ECHO 2D complete M mode without contrast,and a 48 hour Holter Monitor..

    So after I was done testing,I had called a week later for the tests results and the nurse said that she could not tell me the results and that only the Dr could tell me the test results and that he was on vacation and she did not know when he was coming back!!

    By this time I have had it with the poor treatment I was receiving.So I went to the ER with this issue armed with the above info as well..They then admitted me for a series of tests and a induced stress test in the morning.
    Long story short a total 4 heart doctors spoke with me and only one Dr. had some what of a clue which she happened to be the only female of the 4 doctors.She said that my symptoms sounds like they could be autonomic.
    Then I said I already know this and if you guys would have read my carried in info we would have actually gained some ground..They diagnosed my condition as Sinus Tachycardia
    Soon after my ER overnight stay visit.My temporary cardioligist called me with the tests results and said everything was fine.so instead of flying off the handle,I politely asked that I need a doctor who can diagnose POTS.
    He then sent me to a nerve conduction pain specialist!!
    "You will see very shortly" that this cardiologist is either incompetent or purposely leading me on a wild goose chase!

    As you all can see, I have developed an attitude by this time because the other 3 doctors said that all my tests were fine and that "I had occasional mild tachycardia and this was NORMAL FOR ME"!

    So next I had an appointment with my endocrinologist to go over my endocrine system tests.
    I told him how frustrated I was for the fact no doctor that I've seen has a clue about POTS..
    He then said that the Cleveland Clinic could help me but I would need a referral from my PCP..
    So I then stopped at my PCP on the way home and asked for a referral to Cleveland Clinic.
    And the nurse said that the doctor was busy and for me to try to call later.so I call later then call multiple times through a period of 5 days to no avail.By this time I knew she was not going to refer me.

    So I managed ON MY OWN! to get the above appointment with Doctor Yeager but the earliest appointment is Dec 10TH.

    So I then decide to call my Cardiovascular Disease specialist. temporary misleading cardiologist to maybe get a referral to a sooner date with Dr. Yeager,and the nurse tells me he is on VACATION AGAIN! But she said she would see what she could do. Now
    This is where the "You will see very shortly" comes in from above.
    The nurse calls me the next day and tells me that there is a doctor who can diagnose POTS who comes once a month to the same office as my temporary misleading cardiologist!!


    How did he not know this POTS doctor exists?!!

    I then went to initial evaluation appointment of the only doctor in the this entire health network corporation.

    He walks in to the room and starts talking about things that were not even close to being related to POTS for the fact he had no idea what he was seeing me for.(talk about a Dr. (my temporary misleading cardiologist) who can cover his own tracks.
    I immediately stopped him and said,I am here because I was told you can diagnose POTS.

    He said Yes,so then I talked about my info of the poor man's tilt table test that he was supposed to have but mysteriously did not and he quickly recognized that I knew what I was talking about so he went and ordered a tilt table test.
    I was then officially diagnosed with POTS however he was morbidly weak with his dictation in order not to offend every dr. who basically told me I was full of shit including my PCP.
    I am diagnosed with POTS however no dr will recognize it.For instance,my PCP has told me straight to my face and I quote "POTS is just a fancy name for orthostatic intolerance and your use of snuff,tobacco is causing it.If you quit using tobacco your orthostatic intolerance symptoms and blood pressure/excessive heart rate problems will dissipate"
    I also had a recent ER visit because of feeling like crap while lying in bed.(this is the only way I usually can relieve my symptoms and BP and tachycardia) however my my pulse was 118 while lying down.
    So I went to the ER they tried to give me metoprolol and I refused because my POTS doc specifically said that I can't take any medication that affects blood pressure for the fact it will make the POTS condition worse due to my extreme fluctuations of blood pressure.
    I told them to call him and they just dismissed my plead.
    Said I would not cooperate and continued to call my POTS, sinus tachycardia..
    However they did find what was causing my immediate tachycardia which was a urinary tract infection,gave me antibiotics and sent me home

    Now, if all the above is not text book definition of Cognitive Dissonance, Avoidance, Denial, & Rationalization.
    I do not know what is!!!

    See this thread for a better understanding of my reasoning for not taking ANY medication that affects blood pressure
    Finally legitimately diagnosed with POTS! but as my horrible luck would absolutely have it
     
    Last edited: Oct 14, 2014
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  13. anciendaze

    anciendaze Senior Member

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  14. Tired of being sick

    Tired of being sick Senior Member

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    @anciendaze
    Lol.......

    I have to laugh about it ,Right?

    Otherwise I will just continue to go insane,over the rainbow,toys in the attic,truly gone fishin, crazy!....
     
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  15. anciendaze

    anciendaze Senior Member

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    @Tired of being sick,

    Looking on the bright side, at least you escaped with your life. One of the aspects of involuntary commitment with a psych. diagnosis is that cause and effect of tachycardia get reversed. Here's a report of an example in current news. The cute trick here is that the staff has been told the patient is easily overexcited and morbidly concerned about health. This causes them to switch off the alarm which reports HR above 185, which is said to upset her. Following this action there will be no records of episodes of tachycardia, thus supporting a psychiatric diagnosis. No single individual involved is aware of circular reasoning because it takes several people to close the loop.
     
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