Webinar on Lyme - state of research on persistence

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LHCTom
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Webinar on Lyme - state of research on persistence

Post by LHCTom » Thu 15 May 2014 17:29

Special Webinar on Lyme Disease
May 22, 2014 1:00-2:30PM EST

The HHS Working Group on Lyme and Other Tickborne Diseases invites you to participate in an upcoming webinar.

This webinar will highlight the state of research on persistence of Borrelia burgdorferi.


Convener Dr. Ben Beard, CDC

Moderator Dr. Joseph Breen, NIH

Speakers Dr. Stephen Barthold, University of California, Davis
The Comparative Biology of Borrelia burgdorferi Persistence
Dr. Linda Bockenstedt, Yale School of Medicine
Design of Animal Studies to Assess Borrelia burgdorferi Persistence
Dr. Monica Embers, Tulane University - Studies of B. burgdorferi Persistence in the Nonhuman Primate
Dr. Adriana Marques, NIH Searching for Persistence of Infection in Lyme disease
Dr. Linden Hu, Tufts University Borrelia burgdorferi Persistence: Consensus and Controversy – where do we go from here?

http://www.cdc.gov/lyme/resources/May20 ... in_508.pdf
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

Camp Other
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Re: Webinar on Lyme - state of research on persistence

Post by Camp Other » Thu 15 May 2014 20:51

LHCTom wrote:Special Webinar on Lyme Disease
May 22, 2014 1:00-2:30PM EST

The HHS Working Group on Lyme and Other Tickborne Diseases invites you to participate in an upcoming webinar.

This webinar will highlight the state of research on persistence of Borrelia burgdorferi.


Convener Dr. Ben Beard, CDC

Moderator Dr. Joseph Breen, NIH

Speakers Dr. Stephen Barthold, University of California, Davis
The Comparative Biology of Borrelia burgdorferi Persistence
Dr. Linda Bockenstedt, Yale School of Medicine
Design of Animal Studies to Assess Borrelia burgdorferi Persistence
Dr. Monica Embers, Tulane University - Studies of B. burgdorferi Persistence in the Nonhuman Primate
Dr. Adriana Marques, NIH Searching for Persistence of Infection in Lyme disease
Dr. Linden Hu, Tufts University Borrelia burgdorferi Persistence: Consensus and Controversy – where do we go from here?

http://www.cdc.gov/lyme/resources/May20 ... in_508.pdf
This should be interesting. I wish they'd include Dr. Kim Lewis, too, given he's investigating persister cells in Borrelia burgdorferi.

It isn't clear how the format of this discussion is going to work if anyone can call in. I wonder how they're going to handle calls given the level of interest from the Lyme disease community. It may be they will have someone moderate incoming calls and screen questions.

velvetmagnetta
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Re: Webinar on Lyme - state of research on persistence

Post by velvetmagnetta » Sun 18 May 2014 12:13

Wow. I am impressed - I didn't think the CDC would be this brave!

I have so many questions for them, they're coming out my ears. I bet we all do.

Maybe we all could list all of our questions in this thread and see how many overlap. This way, whoever gets to talk to them will have an arsenal of questions to ask. I know I have some in common with many people on this forum, but I also have some questions that may or may not be similar with others'.

Here are some of mine:

Does Lyme persist?

If they cannot answer that one, then: How can we find out if Lyme persists? Why are we trying to find persistence by xenodiagnosis? Why not spend that time and money for an FDA-approved culture test instead?

If Lyme does not persist, then what is wrong with those of us still sick after both short and long courses of antibiotics?

Why do many people feel better while on antibiotics?

Is the "Herxheimer" a true herx from the release of toxins? If so, what is or are the chemical structure(s) of these toxins? And can an anti-toxin be created to combat the immense pain from them?

If the pain people experience after antibiotics is not a true herx, what is it? Why does it go on and on and on and not stop for some people?

Does Lyme damage nerves? If so, how? Is this damage permanent? Which part of the nervous system is effected? And can we expect proper pain support for this kind of intolerable pain?

Does Lyme inflame the brain and spinal cord? If we do not know this yet, why not? MRIs are available to study this reaction and it is not subjective pain.

Why has the AMA fined my doctor for prescribing long-term antibiotics for Lyme when they are the same antibiotics used long-term for acne?

If my doctor is not allowed to prescribe long-term antibiotics for people with extensive Lyme problems, then what is he supposed to do?

If all my doctor is allowed to do is manage my pain, then why tie his hands so that he can't prescribe me the proper dose of pain medicine?

Why does it say on the CDC website that only 10-20 percent of people experience "lingering pain" after antibiotics when is it so obviously more than 20 percent of us? Where did you get that number?

How can you call being bedridden and in severe pain "Lingering Symptoms"? It makes it sound so minor when my whole life has been taken away by this illness.

I have many more questions, but I have to rest. Please, I would love to hear what other people would ask the CDC and other researchers if given the chance.

velvetmagnetta
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Joined: Sun 23 Feb 2014 22:47

Re: Webinar on Lyme - state of research on persistence

Post by velvetmagnetta » Mon 19 May 2014 2:38

Only 4 more days until the May 22nd seminar where we will get our ONE AND ONLY chance to speak with the people in charge of which direction Lyme research takes!

The American CDC informs the European CDC equivalent and vice versa, so this online question and answer seminar is important to all of us.

They NEED our input - that's why they're asking.
Last edited by velvetmagnetta on Mon 19 May 2014 5:14, edited 1 time in total.

velvetmagnetta
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Joined: Sun 23 Feb 2014 22:47

Re: Webinar on Lyme - state of research on persistence

Post by velvetmagnetta » Mon 19 May 2014 5:12

Some questions for Linda Bockenstedt:

You have found dead, left-over, immune-reactive Lyme spirochete debris in mice. Have you yet found this debris in humans?

Do you have any ideas as to how to rid the body of this debris?

Is inflammation from immune-reactive debris enough to explain the myriad neurological problems many Lyme patients have experienced and continue to experience after aggressive courses of antibiotics. Do you have any ideas for what could be the cause of our debilitating post-treatment pain?

How is xenodiagnosis better than developing an FDA-approved Lyme culture test for finding Lyme persistence?

Wouldn't a more direct culture test be more efficient?

Questions for the CDC:

Many post-Lyme patients have no way of knowing if they have yet eradicated the disease due to continuing unbearable symptoms. Why did the CDC argue so vehemently against the Advanced Labs culture test when the problem was contamination, not the culture test itself?

Why hasn't the CDC tried to duplicate the Advanced Labs culture test results when there was no argument against the Advanced Labs procedure? Isn't this type of culture test important enough to warrant some effort to verify its efficacy?

Why has there been NO effort by the CDC to try to duplicate the Advanced Labs culture test, but instead, vulnerable and desperate Lyme patients are left on their own to pay almost $600 for this test that the CDC has written numerous letters against, but yet has not responded with its own experiments to see if the test is good?

Why are we spending so much time, money, and effort on xenodiagnosis when a potentially good formula for a more efficient and accurate culture test is available?

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If anyone wants to add to these questions and worries, please do!

I am curious what duncan would add.

Also, I know LHCTom might have many questions about the similarities of Long-term Lyme and Chronic Fatigue (ME) as well as the possible genetic factors involved. If you have time, I would love to read what you would ask the CDC directly!

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To hv808ct:

You seem to lean towards the non-persistence camp. I tend towards that way as well only because some of my worst symptoms resolved after antibiotic treatment (my ability to swallow, for instance) but I incurred many extra and much more painful symptoms several weeks into that original antibiotic treatment.

I was told at the time that this pain was from the "Herxheimer Effect" and that it would resolve eventually. It never did. For 5+ years I endured the worst pain I could have ever imagined possible and am only just now starting to feel a little better (see my Jasmine Auriculatum post). I no longer believe that the pain that began after antibiotic treatment and continues to this day is from any kind of Herxheimer Effect.

I also doubt that this continuing pain is from toxins at all because not one researcher can seem to name which toxins these are. Also, cholestyramine, which is supposed to help the body remove these toxins made me feel horrible. And the longer I took it, the worse and worse it made me feel. If it was indeed removing these unspecified toxins, then wouldn't I have felt at least a little better after several months on it?

So, hv808ct, I see you post a lot of things arguing against persistence. I would really like to know what you would ask the CDC.

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All of you out there reading this:

Stand up and be counted! Or, since you probably can't even stand up, SIT UP and get to your laptop and get your grievances with the CDC aired! This is our time. Try and put in the extra effort to get your questions out there. I don't think we will have such a chance again.

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