IDSA HEARING: Follow the hearing and comment 8 a.m.-5 p.m. ET, July 30
We are providing blog updates of testimony throughout the day.
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****4:39 ET–panel re-called some speakers to ask additional questions. What did Dr. Steere think of how Phillips quoted him? (they were old studies, his opinions have changed.) What about Dr. Johnson of CDC regarding two-tiered testing (she says she was quoted out of context). Dr. Stricker was allowed to have the last word. He said the system for testing Lyme diseease in this country is broken, and needs to be fixed. Dr. Baker (chairperson) adjourned at 5 pm, after stating the panel hopes to reach its conclusions before the end of 2009.
****4:15 ET–Dr. Gary Wormser, MD (Lead author of the 2006 guidelines) He discussed differences between 2000 and 2006 guidelines. In going over the guidelines, he mentioned “neurologic symptoms in late Lyme is extremely rare.”He said guidelines are voluntary, not intended to supplant physician judgement. He said no benefit to longterm abx. Largely discounted the importance of animal studies showing persistence. Discounted studies that showed persistence in humans. Only thing he’d change in the guidelines is a little longer therapy for babesiosis.
****3:50–Dr. Ray Stricker, former ILADS president. Challenges the IDSA’s stance on lab testing. The two-tiered system is woefully inadequate. Not only shows how the tests are unreliable, but he quotes Dr. Johnson of the CDC (earlier testifier) from a presentation she did last year. In today’s testimony, she said how great the testing is. In the passage he quotes, not so much. Challenges notion of “implausibility of persistent infection.” Challenge to early LD treatment duration.” (Refutes with failure rates shown in many studies.) Challenges IDSA’s Late neurologic Lyme treatment recommendations. Showed systematical errors and misleading statements in IDSA guidelines. STricker maintains that abx is relatively safe and justifiable in chronic LD.
****3:32 pm ET–Arthur Weinstein, MD. Agrees with guidelines, no long-term abx. Would replace “post Lyme syndrome” with “somatization syndrome”–(Ie, it’s all in your head). Says antidepresseants, cognitive therapy, and “not labeling it as a medical disorder” as being importatnt to treating. Singled out “advocacy groups” as promulgating the idea of chronic Lyme. He’s a rheumatologist, but he was talking more in psychological terms.
****3:20–taking 10 minute break*****
****2:55 pm ET–Dr. Steven Phillips, ILADS past president. Refuted statements in the IDSA’s guidelines, often by using published studies by the guidelines authors themselves. Showed 25+ studies documenting persistent Bb in humans. Says IDSA statement that “no convincing evidence exists,” is an “egregious midstatement,” and patients are being harmed by the guidelines. In answer to question, he spoke about cystic form of Bb.
****2:29 pm ET–Allen Steere, MD. Talked primarily about Lyme arthritis, as the primary symptom of late LD. Says few people have neuro-Lyme. Says all patients with late Lyme will be seropositive by two-tiered system. Said Lyme neuropathy and Lyme encephalopathy are RARE and the effects are SUBTLE and treatable with 4 weeks of IV abx. Believes antigen testing has not shown to be reliable.
****2:01 pm ET–Dr. Ken Leigner. MD. (physician/scientist) Riveting account of several extremely difficult Lyme cases that were very well studied. Showed how sick people can get–how antibiotics can help–how direct detection methods are what’s really needed. We need “general reassessment of everything we know about Lyme.”
****1:47 pm ET–Dr. Sunil Sood, MD. ID consultant to pediatricians. Pediatric ID doctor. Author of textbook. He firmly agrees with IDSA guidelines. No evidence of transmission of Bb between mother and fetus. Ring-shaped rashed are over-treated for Lyme.
****1:23 pm ET–Dr. Brian Fallon, MD. (Columbia) Disagrees with IDSA guidelines saying long-term abx aren’t effective. He says they have been shown to be effective, tho there are risks.Discussed adverse effects in his study, especially those with PICC line and staph infection. Discussed Krupp study at length. His bottom line was that repeated abx for fatigue is effective, with risks. Panelist asked his recommendation for someone with a particular scenario–would he recommend retreatment. He is absolutely yes, he’d recommend that.
****1:01 pm ET–Dr. Eugene Shapiro (former member of 2000 and 2006 Lyme guidelines). Talked about study promoting one-dose doxycline Lyme prevention. Then, Re: Chronic LD–“majority of patients labedled with LD have no eveidence of ever having it.” No benefit to longterm ABX, high risk. Qoted Oksi study saying long-term abx no better than placebo. No justification for changing current IDSA guidelines. Need more research into “medically unexplained symptoms.”
****12:36 pm ET–Dr. Sam Donta, MD. Infectious Diseases. Made comparasions between CFS, FM, Gulf War Illness, and Lyme. Question about western blot tests. Labs should report all bands. Spoke about SPECT scans. Questioned Klempner study. Said Klempner shows that a certain kind/length of treatment didn’t work, but doesn’t prove different/longer treatment couldn’t work–though that’s how the IDSA interprets it. He said combination abx can be beneficial.
–-11:45 am ET–breaks for lunch for 45 minutes–
****11:23 am ET–Dr. David Volkman, physician/scientist, formerly of NIH. Testified by telephone. He spoke about how Bb can persist in dogs, mice and humans. he talked about seronegative lyme disease–(blood tests negative, but symptoms say yes). Patients can be chronically infected by Lyme but have negative blood tests. He critics the CDC surveillance definition–both for problems with the definition itself, and also for how it is misapplied. Failure to meet the case definition is wrongly equated with not having Lyme. He oppses the IDSA recommendation for a single dose of doxycycline to prevent Lyme after a tick bite–ineffective.
****10:58 audio visual came back after I clicked on “self serve” buttom on bottom left corner of IDSA screen. I missed much of Dr. Johnson’s presentation, but when I got AV back, she was talking more about Lyme tests. She staunchly defended the IDSA guidelines’ two-tiered testing system. She said it isn’t in patients’ interest to test people who don’t have a “high probability” of having Lyme. Later, under questioning, she admitted that the various studies she has relied on for her conclusions have had very small sample sizes. She said that’s to be expected when you’re dealing with a disease “thought to be rare.”
****10:50 am ET–lost sound and picture from IDSA feed****
****10:47 am ET–Barbara Johnson, Phd. from CDC. She supports two-tiered serological testing, per IDSA. (ELISA & Western blot.)
*****10:40 am ET–the panel has taken at 5 minute break****
****10:12 am ET–Alison DeLong, MS. Researcher, Center for Statistical Studies, Brown University. She challenges two recommendations from the guidelines. 1. Retreatment of persistent symptoms not recommended 2. Long term abx treatment not useful. She concludes there are so many shortcomings that Klempner’s trials cannot be used to formulate treatment guidelines.
****9:45 am ET–Dr. Ben Luft, Stonybrook. Guidelines over-emphasize objective symptoms (lab tests) over subjective sx (pain, fatigue, cognitive impairment–even though subjective sx are the hallmarks of chronic lyme. Discussed several studies demonstrating persistence and transmissibility. Luft ran over time, so no questions from panel.
****9:25 am ET–Dr. Philip Baker of American Lyme Disease Foundation, formerly of NIH. Defended current guidelines as being correct. Says long-term abx for Lyme is unjustified and harmful. No evidence showing abx as safe. Defended the studies relied on by guidelines.
****8:50 am ET–ILADS president Dr. Daniel Cameron went through the IDSA guidelines showing what he considered to be flaws: a poor level of evidence, risks that were not considered by the IDSA panel, costs that were not considered. He outlined significant problems in the studies relied on by the guidelines. Panel member asked if guidelines should be “junked.” Cameron said no, but there should be significant revisions.
****8:30 a.m. ET–CALDA CEO Lorraine Johnson showed her own SPECT scans, showing major changes in her brain before and after long term antibiotic therapy. She presented results of CALDA’s survey of 3,000 Lyme patients, indicating that more than half of respondants remained ill under the IDSA guidelines. Of those, more than 60% improved with additional treatment. She compared Lyme treatment (per IDSA–no options in treatment) with cancer and other diseases which allow for a wide variety of treatment options. Several panel members asked her questions, which allowed her more time to discuss insurance denials.
****8:10 a.m. ET–Patient advocate Tina Garcia spoke movingly and articulately about her own experience with Lyme, as well as those of the many patients she has tried to help through the years. She has suffered from Lyme for 10 years, only 4 of those getting appropriately diagnosed and treated for Lyme. A passionate presentation of the patient’s point of view.
****4:42 a.m. Pacific Time–7:42 Eastern Time. Things are supposed to get going within a quarter hour. We are standing by to provide updates throughout the day. Remember to refresh your browser often****
test
I have Lyme Disease since 1999 which was treated off and on with antibiotics for one year. Since 2000 I have been consistently taking an antibiotic, Minocycline, 100 mg. 2X/day. I have been living symptom and pain free all these years – I felt cured. A few weeks ago, I decided to stop the antibiotics and, within a very short period of time, the worst of my Lyme symptoms reappeared with a vengeance. Excruciating headaches and eye problems along with some minor discomfort in my toes and fingers. These are symptoms I had very badly 10 years ago; they were, apparently, totally dormant as long as I was on the antibiotic; and they have now reappeared within one short week of my going off the medication. I first took Ibuprofin 400 mg. to relieve the severe headache that I began to have from the moment I woke up to the moment I went to sleep but, within a few days, I decided to go back on the antibiotic. I am getting better taking the antibiotic again but not as perfect as I was before I decided to stop it. The excruciating pain in my head is at least gone for now replaced by a somewhat dull pain that is bearable and at least allows me to function. Why would doctors deny patients antibiotics if that is the only medication that can relieve the excruciating pain caused by Lyme Disease? As a US citizen living in Europe and having European (socialized) health insurance, is there any cure for Lyme out there because, if there is, I am sure I can find a doctor on this continent willing to prescribe it for me? I did receive a good tip from one of your commentators about some books I should purchase and read and I have already ordered them but, in the meantime, what is a proven regiment of antibiotic treatment that has the greatest success rate? If long term, disabling symptoms can reappear so quickly after stopping the antibiotics, does this say anything about the chronic nature of this disease?
IDSA Hearing today. Texas is on board.
hi , a guy from ireland here
S.Central PA is here
Good Morning
This is a test!
I want you all to consider the science behind the "debate" of Chronic vs Post Lyme.
A fundamental aspect of science is that the simplest theory that fits wins. It is called "parsimony" or Occam's razor.
Follow this link:
http://en.wikipedia.org/wiki/Occam%27s_razor
Nicely done Tina 🙂
Good Morning
Tina has done a remarkable job opening the morning, setting the tone presenting truth, incorporating science and speaking for the LD community and for our families.
Good morning.
I will be on-blog on and off today. First impression is that Tina did a fantastic job- I'd love to get a copy of her presentation!
JJB
well done Tina, great presentation and you did excellent with the questions.
Well done.
Here is an interesting bit of information about chronic lyme disease from the Rhode Island Dept of Health that came my way today.
Final paragraph for the first page states that:
"The State of Rhode Island recognizes chronic Lyme disease as a real problem, but, in the absence of medical consensus, leaves treatment decisions at the discretion of physicians. It does currently require insurers to cover the cost of chronic Lyme treatment."
Follow the link for more information:
http://www.health.ri.gov/disease/communicable/lyme/chroniclyme.php
Anyway to get numbers on how many are watching on the web?
Is there a list of presenters for the day?
TY so much Lorraine. Your presentation was brilliant and your fielding of questions and interaction with the panelists and their questions very impressive. Blessings.
A great job by Lorraine in her testimony!
Lorraine is brilliant we are so lucky to have her with us!
So far, well done. Lorraine, excellent presentation…thank you so much for all the work you have done for us. I hope you will be able to add more later on this afternoon. Watching from Oregon…but support all that are here watching/praying and hoping that awareness will be achieved for all us suffering from this horrendous disease.
Yes, there is a list, on the IDSA site
Great Job Tina! You told the story of so many. Thank you!
Here's the schedule of presenters from (http://www.idsociety.org/Content.aspx?id=14726):
Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ
Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA
Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California
Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD
Ben Luft, MD, The State University of New York, Stony Brook, NY
Allison Delong, MS, ILADS & The Center for Statistical Sciences, Brown University, Providence, RI
Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
David Volkman, MD, Nissequogue, NY
Sam Donta, MD, Falmouth, MA
Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT
Brian Fallon, MD, Columbia University Medical Center, New York, NY
Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
Ken Liegner, MD, ILADS, Armonk, NY
Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
Steven Phillips, MD, ILADS, Wilton, CT
Arthur Weinstein, MD, Washington Hospital Center, Washington, DC
Raphael Stricker, MD, ILADS, San Francisco, CA
Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY
Dr. JJB, thank you for saving my niece's life many times. Alicia is a beautiful red-headed young lady from West Virginia.
Thanks to Alicia's struggle for life, I recognized the symptoms in my own family…both parents and 5 of our 6 children have Lyme & coinfections.
Alabama has over 32% of counties endemic for Lyme disease.
West Virginia has over 46% of counties endemic for Lyme disease.
God bless our LLMDs!
Listening but still praying.
THIS is where Occam's razor comes in
That is right, just limit the people who have it by arbitrary criteria.
If you had Lyme disease and never had is treated for years it does not mean you don't or didn't have it.
In regards to Baker-
As our dear friend CRJ says; "you can't see what you don't believe"!
The testimony is so fascinating it's hard to take a break to comment on it.
Tina Garcia portrayed the living hell experienced by patients and explained the role played by IDSA guidelines in putting them there. She emphasized the medical neglect and the inhumanity of denying care to sick people. She called on panel members to rise to a higher standard – "truth and integrity" – when they are deciding whether to change the guidelines.
Lorraine Jophnson, CALDA CEO, said that the IDSA has no accountability for the patients who are affected by their guidelines – guidelines which are regarded as law. She called on the panel not to extend beyond their evidence base, but to recognize areas where the science is still uncertain and permit clinical judgment.
Dr. Baker does not understand Chronic Lyme Disease. Just do a blood test to see the bacteria's action. Thank you Lorraine for being there to fight for us.
Phillip Baker from LDF. Is he trying to help?
I am remote from phone or cable, computer access is too slow to be able to listen live. Am hoping someone is recording hearing or that trenscript will be available later for those of us who cannot listen live. Will that be possible? I would really like to hear what I have missed. Many thanks to all the wonderful LLMDs and those with whom they work.
Is anyone else experiencing stuttering of the audio of the webcast? Perhaps its my internet connection, but I have DSL. Just wondering – thanks
You say assume the worst and patients be damned!
I meant assume the best and the patients be damned.
TY very much, Dr. Cameron. Your presentation was impressive and very informative. I appreciated the initial definition for establishing true evidence based guidelines (Dr. Sackett)and how the current guidelines are missing that mark. You clarified the breakdowns in the four clinical trials in a way that we as volunteer LD educators can better understand and speak to when meeting with physicians on behalf of patients and in promoting the physician training preceptor training. I also appreciated your suggested changes to the evidence grade and to the overall guidelines. Excellent comment w/regards to the fact that NIH was able to enroll qualified candidates" for their study proving that CRD exists, regardless of the IDSA stating that it does not. Very impressive.
What I am most appreciating so far, are the quality of the questions coming from the panel and the professional discussion that is taking place between presenter and panel members.
This is for me, personally, an answer to prayer and lends itself to hope for a shift in the paradigm. Appreciate the facts presented, the science, the courage and the truth.
Blessings.
Dr Baker… Sigh…
Clearly shows head in the sand thinking, and then he goes on to dismiss charges againstr the IDSA as ravings of Lyme patients, totally ignoring the fact that it was the attorney general who made these official accusations. Finally he says that it is up to Lyme patients to do their own double blind placebo controlled studies. Ha! I thought that was his job at the NIH!!
Amy, Phil Baker is from ALDF not LDF. Completely different organizations. ALDF supports IDSA viewpoint.
Most people who DO have chronic Lyme problems probably DIDN'T have a correct diagnosis to begin with.
I'm glad they picked up on that and they keep questioning him about it.
Dr. Baker said Lyme disease is diagnosed correctly using the CDC criteria for DIAGNOSIS.
The CDC case definition of Lyme disease was developed for surveillance purposes, not diagnostic purposes!
This is a test; also, listening to Baker. My view is that treatment trials cannot be used to either prove nor disprove the persistence of the organism, and its abiliity to continue to cause disease, at the tissue level.
Dr. Baker is making me very frustrated. Being in both Klempner and Fallon's studies, I can tell him more than he'll ever know about these studies and how the patient feels while participating
Sorry to say, the only thing "good" that I heard from Dr. Baker's speech, is that he retired in 2007. Not soon enough doc…
Edie, the entire hearing will be available after today on the IDSA website.
I have been very impressed
so far. Missed 5-10 minutes w/ pc problems.
Tina, great job; it was your beginnging that i missed. Your voice was well controlled. You showed STRONG DETERMINATION and grit to overcome what you have to date.
You represented us well; well done my arizona friend.
Lorraine, what a blessing you are! Slides have helped us hear/read better.
Dr. Cameron; well done! Good slides too; next time please use ARIAL or VERDANA for those of us that can NOT read timesnewroman font; huge thanks 🙂
Baker lived up to his reputation!
I have enjoyed 2-3 comments by saying SHALL WE SCRAP THE ENTIRE THING AND START OVER?
Ken stated alot of time was put into it and he felt 3 areas should be looked into and they would know these when reading over idsa guidelines.
Both presenters said NO, just redo certain areas.
Dr. B, thanks for joining us!! THANK YOU for all the work you have done all these years on behalf of ALL lyme and co-infection patients!! YOU TRULY ARE A GEM IN THE ROUGH.
IOWA LYME ACTIVIST…bettyg
I wish the person coughing into the mic would move or leave. Anyone got a cough drop?
Ben Luft just made a great comment about the problem of "editorializing" in guidelines. Case in point, the IDSA guidelines authors do not believe in persistence of infection after treatment. In the guidelines they make comments about the plausibility of persistence. Luft thinks this is fine to discuss at meetings or in articles, but not in guidelines.
Dr. Baker – so much rhetoric; it had to be obvious for the panel members. He was not convincing in his attempt to defend his position. It was concerning to me also that he alluded to the CDC standard w/out acknowledging surveillence vs. diagnosis. Found it intriguing that he defined Fibromyalgia as 'symptoms of unknown origin' (does this not lend itself to pursue further studies?,given that you are aware of patients who continue to present w/suspicious symptoms that carry no clear dx/treatment?) w/out considering both sides of that paradigm. In mentioning the four studies (Klempner, Fallon, Krupp)on the heels of Dr. Cameron's in-depth definition regarding them, I felt was an embarrassment to the position and those he represents. He admitted that there is not a 'precise' definition for chronic Lyme. Noteworthy! Also admitted in response to a panelist question regarding the sureness of these studies "you can never be sure". His responses neglected clinical and differential dx.
While in his early days of research there may have been a different passion and perhaps desire to help, on this day, sadly for all, he missed the mark.
Blessings
Here in Tx I can't find a Dr who doesn't see Lyme as anything more than the common cold. I've had it at least 2 years. It's rare in Tx, but I did camp out in MO and AR, so maybe it was contracted there. I test positive across the board they say but yet they don't know what to do for it. Hopefully this hearing will help.
Thank you so much, however is going to the work to right this out! And thank you to everyone involved in gathering information and making presentations for this panel.
Even if the IDSA doesn't change a thing, this is still a step in the right direction.
After all- when you have 3000 people take part in a study about chronic Lyme, you can't claim that they are all crazy anymore!
Being from Germany, having Lyme infection as a souvenir from the Californian coast 20 years ago ;-), I am following the discussion with much excitement.
Thank you all over there for your engagement and the strong activities to bring up lymeawareness.
Karen_Loraine, it's not as rare in Texas as they act like it is, I don't think. It IS very hard to find a doctor here that believes in it and will treat it aggressively. I had to finally fly to Connecticut to get treatment after I had been dealing with it for over 10 years.
Please send link on where to view meeting.
https://www.lymedisease.org/news/idsa_lyme_hearing/172.html
comments following Luft presentation:
1. if you list fever as a symptom rather than a sign, the majority of seropositive dogs that i have diagnosed and treated (and that have responded as expected) showed only symptoms (generally fever, pain, depression, anorexia)
2.further comment on the objective vs. subjective issue: it is possible that a careful physical exam might find SUBTLE signs that are generally not recognized; therefore what is objective to a more perceptive practitioner may be missed by others
For those of us who are having difficulty viewing the webcast, here is the direct link to the webcast:
mms://youniv-StaticPoint5.wm.llnwd.net/youniv_StaticPoint5
Cut and paste this address into "Open URL" in Windows Media Player or Quicktime.
If you are using Quicktime and the webcast doesn't run, install Flip4Mac:
This allows Quicktime to read Windows Media Files:
http://www.microsoft.com/windows/windowsmedia/player/wmcomponents.mspx
I do stats and Allison Delong is amazing in evaluating a study. She caught things I never noticed but she is right. But no just right – very truth in her presentation.
To poster@ 12:13:37 If you have "Windows Media Player", paste this in once you have opened it,into the "Open URL" field,which is a "pull-down" menu…..
mms://youniv-StaticPoint5.wm.llnwd.net/youniv_StaticPoint5
Joe
I agree w/you Phyllis. Appreciated that also. Dr. Luft clearly proved through the scientific studies referenced that "infection tends to be incidious". He supported the fact that the organism persists in the patient but also spoke to the fact that 'where' it persists in the host is not clearly known. Excellent presentation supporting persistent infection that merits further R&D and serious consideration for re-defining these guidelines while we await the emerging science and necessary therapies widely taught and incorporated. It just increases my tremendous respect for the incredible trail blazed by Dr. Burrascano and those who have gone before us.
Blessings
Allison is very interersting. I knew the Klempner study was a disaster!
Fallon's is a totally differeent story!
Bravo, Allison
Excellent graphs and statistical info
Allison,
You go Girl!!!! Slam Klempner! Sorry I am a little biased with good reason!
Does anyone know if a recording of the hearings will be available anywhere? I am at work all day today so I cannot listen live but I'm dying to hear it!
I am with Julie, Is there a recording being made that will be posted somewhere.
Jule and Ross, someone said earlier that the whole thing would be available on the IDSA website after today.
So far, at break-time, these are my impressions-
-Questions from the panel were not at all malignant, and to me, only one questioner seemed to hint at personal bias
-Tina did a terrific prtesentation that indelibly set the stage for the entire hearing, and in our favor. Mucho congrats
-Allison's analysis was devastating to the other side- that, combined with what Dan said, does a lot to invalidate much of the foundation upon which the guidelines were based
-Dr. Baker was benign; Lorraine, onm the other hand, spoke like a true attorney- facts and only the facts
-I am a little disappointed by the response to the question about whether to revise or scrap the guidelines, nobody was bold enough to just say outright, "scrap them, they need to be totally rewritten not only because of the flawed content, but also because none of our (ILADS, etc) reps were on the panel"
-Well done!
JJB
I'm not trying to be a quack here and control the whole discussion board, but I wanted to quickly thank Dr. B for being with us today. It means so much to have a man of his stature on our side and speaking out.
Thank Dr.B
Is the Klempner study data not been made available for further analysis? Why? Allison did a great job!
Julie,Ross– Don't know about an actual recording being made, as in DVD/CD,but it is supposed to be "archived" on the IDSA website for 1 year after the hearing's conclusion.
Whether it will be "hour-by-hour", or searchable is anyone's guess.
Joe
from the IDSA website:
However, the hearing is being broadcast live, in real-time via webcast from the IDSA Website and will be archived on the web for viewing at your convenience. 563513
The hearings will be available for the next 6 months on the IDSA website.
I agree with 'to' and 'Richard'. Allison is a brilliant and very detailed statistician. Wow! She offered a gr8 challenge for 'reliable objective measures'. She reiterated Cameron's position regarding the four studies and offered an in-depth view. Fallon: "well-designed, executed and analyzed". Krupp: "similar to Fallon, well designed for 'fatigue', but problems w/interpretation. Both, small studies." "Krupp made a mistake". He neglected (wrote them off) those patients whose cognitive deficits were 'mild'. Klempner – large study but had substantial statistical problems. Whoa! Also, Klempner admitted that Lyme patients 'are quite sick" and compared that sickness in his study to those patients suffering "similar to those with congestive heart failure". Noteworthy. Allison Delong's presentation was very impressive.
Anyone else having trouble with reception just froze on us?
The sound is not working; screen has gone black.
I just lost the link to the proceedings. Anyone else get cut off?
I have no audio in SC.
I lost the webcast. Anyone else?
broadcast stopped
Uh-oh, I've lost the sound and the picture.
I assume you all are having the same experience.
Just when the two-tier test is being defended.
What an unfortunate coincidence.
We've lost all audio visual on the CDC testing chic? Anyone else.
yea me too, just when it was getting intresting
same here;; no sound, no visual, no nothing
I've lost it too
Yes, I lost the feed as well. Calling tech. Everyone call into the tech You-niversity # to let them know.
1-877-867-7300
Blessings
These captcha codes are not very lyme-brain friendly.
I clicked the "SelfServe" button on lower left corner of screen, and the feed came back.
has anyone else been having problems with the webcast? I have no sound right now.
My Silverlit is Black with no audio…can't see or hear anything, anybody else?
We have lost our feed, hopefully it's temporary. I made a report to tech support.
Thanks Connie! That worked for me too!
back on
yes click the selfserver and then the next (cdn?) button that comes up in same location – came back on.
yea click the self serve line at bottom left of screen and sound comes back
Lorraine Johnson's presentation cut through the IDSA's restrictive guidelines with clarity and surgical precision.
i lost my feed; did the rest of you; it's been down since BREAK time!!
is anyone hearing anything & how?
i went to ON THE MARC also and their feed is down as well.
twitter there very activve!
This (two-tier test, B Johnson) is hard to watch – it's so absurd. Just posting to be able to express my unease. Thanks.
Back On with the Self Serve icon! Will have to listen to a rebroadcast of Lorraine's presentation. Its quite impressive!
ditto, Lorima.
Whoo hoo. We have overloaded the server – this is a GOOD thing
🙂
y screen is black to and no sound does anyone kwnow what to do? I am praying too for all of us
this speaker must have conflicting interests or financial incentives to put out such crap! Who can research?
dr. b,
can you address the fact to others there we can NOT HEAR OR SEE ANYTHING in case they are UNAWARE of this?
thanks big guy!
IOWA LYME ACTIVIST, BETTYG
she said "…late neurological lyme disease – a 'rare' condition" !!! On what does she base that editorial?
Just shoot me… This is too painful.
Barbara Johnson from the CDC…did she just say late neuro lyme is RARE? Oh no she didn't!
Truly one with absolutely no experience or knowledge about Lyme.
Lorraine Johnson did very, very well and made many significant points. She presented a significant amount of testimony. She did particularly well in answering the panel questions.
Dr. Cameron did a wonderful job of presenting. He spoke on evaluation of various studies and rating them. One board member stated his appreciation for Dr. Cameron's ability to evaluate studies and their level of legitimacy, comparing his analysis to that of an editorial board member of a journal.
The panel particularly thanked Dr. Cameron and ILADS for their very thorough and well documented submission.
Panel members in general seem to be trying to differentiate the question "should the guidelines be rewritten totally or should they merely be added to and fleshed out a little more."
The speakers answered very carefully and seemed to try to avoid extremes in answering, but rather pointed out places where the guidelines were weak or where more was needed, or where wider latitude was missing. Dr. Cameron suggested that certain types of evaluation be applied to the various conclusions of the guidelines such as are applied to studies to determine the level of accuracy of their reccomendations.
The thrust of responses was cautious in trying be respectful, to bridge the divide, so to speak, while emphasizing the extremes of the guidelines and the amount of information which was missing which would provide more accuracy and more balance.
The point was made that the proviso to use physician judgement should be taken out of the "disclaimer" section of the guidelines and be incorporated into the main body of the guidelines as this is crucial.
Dr. Luft just made a FANTASTIC presentation. He particularly reported on two studies, one which has not yet been published. He spoke eloquently of the persistence of the organism. He spoke of the Fllux pumps in the Borrelia burgdorferi organism (I hope that I have this right) and the ability of these pumps to clear antibiotics, which he stated was typical for environmental organisms. (the implication being to emphasize the resistance of the organism to antibiotic treatment).
He also criticized the guidelines for dismissing the wide range of antibiotics for "lacking biologic plausability" which is a significant point that merits much more attention.
Allison DeLong is now speaking and is absolutely fabulous in her assessment of four studies, including the Klempner study, which she very factually critiqued. Her conclusion on the Klempner study, in addition to a significant outline of flaws, was that the sample size was too small, and thus was discontinued when it became apparent that the study was not legitimate. She made the point that just because the study was terminated prematurely does not prove that the treatment was ineffective. I wish I could hit "rewind" to more adequately comment on this point.
She did an excellent job of evaluating each of the four studies, and she did a particularly good job of documenting the flaws in the Klempner study and thus challenging its validity in the use it is currently being put to, which is to limit adequate treatment for longer term disease experienced by Lyme disease patients.
Alison is a statistician and responded very well to the panel questions.
click "self serve" at the bottom left corner of your video window. Your picture and sound should come back.
Thanks for the tip on the selfserv thing.
Ms Delong is a biologist – her stats are right on thou – I bet she has or has close relative with LD
If you can't see the webcast — it IS working again — try closing your software and restart it. That's what I had to do.
If you are not getting the feed, do the following:
Click the word at the lower left corner of the window "SelfServ". This brought back the feed for me.
This woman is paid for by us. People like her are the reason that people hate the government
Watching from Massachusetts. Fascinating.
Does anyone think that this panel will be influenced by the testimony here??
Just close the viewing window, then reopen it thru the IDSA site–worked fine for me!
Who approved the speakers. This woman is nonchalantly throwing out important information that is just wrong!
Time to write to CDC/Baker to clue them into the real world, and demand they read the literature in an unbiased way.
Thanks for the self serve tip, it worked.
Does anyone get the idea here that the IDSA people are talking in the past? I have not yet heard anything current in their studies and it appears that they are speaking about "antique" measures. I certaily hope the panel members pick up on this. I have heard studies from 2003, 2006 but none current. I sure hope this makes a difference in the hearing results, cause we NEED help.
i ended up shutting down and brought up from scratch.
i call the tech no. he called back in 2-5 minutes!
close window and try again!
i missed her entire presentation .. sounds HORRIBLE what she has had to say.
I thought Allison Delong was great. Even in Ireland we are told that treatment is ineffective after more than 3 months 'according to studies'. I know they are referring to the Klempner study which every ID consultant feels compelled to follow when deciding their treatment protocol. To have a statistician pull apart the complete Klempner study was great and will give me some fire next time I'm told that more than 3 months in worthless!
probability based on where you live? Domestic travel is a popular thing in the US the CDC should look into it.
Tech support says they had a network problem that is now fixed. Please close and then reopen your viewer window by going back to the IDSA website and clicking on the Attend the Webcast button. I am just doing this and it doesn't seem to improve things much. If I can't get better service I will call back. They may be having a problem because of not enough bandwidth – they probably didn't anticipate this many viewers, now that the west coast is waking up.
very weird, probability based on where you live – and antibodies to Bb irrelevant if you live off the tick map. If you're in a tick area, large niumbers of people will have antibodies, even if they're lucky enough to fight off obvious illness. So it seems to me that the test is even more useless, if you live in an endemic area. At least in a non-endemic area, presence of Bb antibodes might be more relevant, since the whole population is, presumably, not so likely to test positive.
Lorima, PhD Molecular Biology
"probability based on where you live" I picked up on that too…..what hope do we have if one of the "impartial" Doctors on the hearing panel is talking like this!!! He said to Dr Johnson that he asks his patients where they live first, as this will have a great impact on his decision to test or diagnose Lyme? Pardon?!! She seemed particularly pleased with this, I must say.
Yeah, and if you live in a city that's not yet considered to have a high prevalence of Lyme, you're less likely to get diagnosed. How many people in each city then go untreated before that city it considered to have Lyme???
Just testing this–I'll be listening on and off.
My daughter has chronic Lyme. She is 20 and has been sick since age 8 or 9.
We are in MD–Lyme is endemic here.
Allison DeLong also made the point that seronegative patients were not highly represented in the Klempner studies, and in questioning, emphasized that so many treatments have not been studied, and that non-IV treatments also deserved more study.
Barbara Johnson was predictable and defensive. No new ground covered. Suggested the physician strongly consider tick ecology and where infected vectors are found, presumably to determine whether the patient is REALLY infected. Much defense of the two-tiered system of testing, etc.
Oddly, she suggested a new research project, simply questioning residents in a geographic area “have you ever had a diagnosis of Lyme disease?â€
This seemed contrary to so much emphasis on “correct†testing – but now willingness to consider a study where patients simply *answer* whether they have ever had a positive diagnosis.
She was questioned and stated that the Asymptomatic seroconversion rate from the previous vaccine was about 11% and those people were followed (“Dr. Steere can say exactlyâ€) about 6 mos, stated they did not develop other manifestations of Lyme disease, 'seemed not to have clinical signs and symptoms' (now willing to accept clinical (!) diagnosis vs. lab testing)
Re: Barbara Johnson's credentials
See Cure Unknown page 341.
PW got Johnson to admit her published study on almost 100% 2-tier sensitivity (the pub. on which the idea that there are only false positives, not false negatives, on ELISA or EIA)
Was Circular in design!
Because only patients testing positive on 2-tier were allowed in. It was an entry requirement for the study!
But even after Johnson admitted it was circular to PW, she never corrected her publications and clearly still aggressively propagates this absurd model.
One must wonder how this can be – probably severe confirmation bias in her mind, bolstered by IDSA authority figures, and impermeable to criticism or other evidence.
Lorima, PhD Mol. Biol.
Yes, Amy, while she acknowledged first of all the 'limitations', she hurt her own testimony when she then went on to state that it is 'rare'. I had the same reaction as you. She was quick to refer to the fact that this is 'as stated by the IDSA'.
She totally missed it and was not able to satisfy the panelists questions. It was obvious and also an embarrassment to those she is representing.
Dr. Baker needs to be 'very' careful. Her question regarding the screening test was obviously biased and an attempt to sway the panel.
On the other hand, I am so very impressed by the caliber of physicians serving on this panel(as a rule) so far – based on the integrity of their questions and the some of their personal interjections. It gives me gr8 hope. There will be a robust discussion taking place at the end when they are in guideline discussions.
Blessings.
Wow!
Dr. Volkman has come out strongly supporting the ILADS point ovf view! Could not be stated more cflearly!
volkmann's slides really help us since we can not clearly understand what he is saying!
well done dr. v 🙂
Volkman is fabulous – just the right amount of detail, not too much to understand, enough to be convincing.
Lorima PhD
Does anyone know of a list or schedule of who's supposed to give presentations this afternoon?
Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ
Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA
Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California
Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD
Ben Luft, MD, The State University of New York, Stony Brook, NY
Allison Delong, MS, ILADS & The Center for Statistical Sciences, Brown University, Providence, RI
Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
David Volkman, MD, Nissequogue, NY
Sam Donta, MD, Falmouth, MA
Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT
Brian Fallon, MD, Columbia University Medical Center, New York, NY
Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
Ken Liegner, MD, ILADS, Armonk, NY
Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
Steven Phillips, MD, ILADS, Wilton, CT
Arthur Weinstein, MD, Washington Hospital Center, Washington, DC
Raphael Stricker, MD, ILADS, San Francisco, CA
Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY
PM (12:30)–Presenters continue with Donta (In Order)
Joe
An panelist from MA, in questioning of Barbara Johnson, stated he could almost diagnose by asking the question “What town do they come from†as a pretest probability of disease.
Besides being odd for a group that disdains clinical diagnosis, this supposes that no one travels, and that there is no county-by-county variation or hot spots in a state – how quaint!
Dr. Volkman did a great job for the "persisting disease†perspective. He suggested that (IDSA) consideration should be given to misapplication of the CDC surveillance criteria. He also stated that there were flawed prophylaxis recommendations by the “old†guidelines committee (not sure if this means the 2002 committee or if the 2006 committee is now the ‘old’ committee). He stated that following single-dose prophylaxis, 80% of mice remained infected afterward.
Who is on the panel.
I got the list of speakers from the IDSA website, Lyme Disease Review Panel Hearing Webcast link.
be well
Thanks Joe!
Does anyone know whether the composition of the IDSA team has changed since Blumenthal action? If so, what WAS the roster in 2006 (name, qualification, institution), and what IS the roster now (same)? I think this would be useful info to have if we can dig it up. I am assuming (hoping!) the individuals who were suspected of financial conflicts of interest are no longer with this IDSA body.
Also, how does IDSA become the author of these guidlines? – e.g. under whose authority? The AMA? I understand that "infectious disease" group is obvious place to park it, but who decides, and by what process do they empower team like this?
finally, thanks so much for doing this, CALDA et all. I stayed up all night to make the 5 a.m. start time – darned if I didn't subsequently doze off for a while. But this is critical, and it has helped me renew commitment to my treatment, something I was beginning to feel insecure about.
I do wish that Dr Volkman's testimony was easier to hear and understand, in particular his response to the panel's questions. I hope that the panel was able to understand his replies as I could not due to the poor sound quality of his testimony
Dr. Volkman nailed the false rumors that have led to so much confusion w/regards to the Elisa Essay. Perfect following the CDC-Johnson presentation.
His science clearly shows that infected patients can present with 0-multiple bands. He was poignant but clear "Negative Elisa does not rule out infection."
I found it interesting that of the 17 original patients in the cited study, all qualified with having had an EM. The intriguing part that no one alludes to is the fact that all of the symptoms he referenced are mirrored in patients w/Lyme, who DO NOT present with EM. It all tied together in his clarification regarding the lack of integrity in Elisa testing. Loved that he clearly stated, in a room where you could hear a pin drop, and as an original member of the original definitions, that "the CDC surveillance test was NEVER intended to used clinically." Although we learn this as patients in time, it is refreshing and exciting that it was stated openly in a room where all viewpoints were collectively in listening mode! :0 LOVED IT! Sadly, I did not hear Dr. Johnson, CDC presenter, admit this fact during her own opportunity to speak to the whole truth. The panelists have to be conflicted by this.
I found it very interesting that Dr. Volkman disproved the Prophylactic treatment method with the mouse model with 80% of the mice going on to present with infection after intervention treatment. It is a sad realization but one that I am grateful to understand.
Dr. Volkman is a brilliant and brave soul. I respect the integrity of his presentation and appreciate so much his willingness to speak up for the truth!!
Volkman was very clear on his slides that chronic infection has been proven and that the Elisa and WB are not designed for diagnosis, hence a negative test does not mean there isn't a current infection. Go Doc V!
I removed 3 deer ticks I picked up while staying in a log cabin in Southeast Missouri. They all produced E.M. rashes. Dr. Masters fought long and hard to gain acceptance that Lyme, or a strain of Lyme, existed in MO. The location where I was staying was adjacent to a Boy Scout camp. I wonder how many boy scouts come from out of state and go home with Lyme?
I am a native Californian, now living in New Mexico. There is no shortage of support group members in either state, even though doctors from both states told me "We don't have Lyme here."
List of panelists per IDSA (assuming no changes were made after this was published):
http://www.idsociety.org/Content.aspx?id=13310
Following is a list of selected panelists:
Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX
William A. Charini, MD
Peabody, MA
Paul H. Duray, MD (retired)
Westwood, MA
Paul M. Lantos, MD
Duke University Medical Center
Durham, NC
Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO
Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD
David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA
Jeffrey Parsonnet, MD
Dartmouthâ€Hitchcock Medical Center
Lebanon, NH
Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru
Does anybody here know when we might get an answer from the panel after their discussions? Thanks
PVL,
They are supposed to deliberate,vote,and have an answer by the end of the year.
They only problem is I don't think they specified what year……
Joe
It seems to me that there is a need for more research….why can't we fellow sufferers volunteer? It is obvious that they'd get more than the small studies of less than 100 and even more than the largest one of 800.
Who puts out the call for pending research needing volunteers?
There was a univeristy in MA (?)that had a list-serve for depression and breastfeeding studies and could call for volunteers and list the criteria….why couldn't there be one for Lymes?
Did I just sign myself up for creating a volunteer database? LOL Uggg….
9. Sam Donta, MD, Falmouth, MA
10. Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT
11. Brian Fallon, MD, Columbia University Medical Center, New York, NY
12. Sunil Sood, MD, Schneider Children’s Hospital at North Shore, Manhasset, NY
13. Ken Liegner, MD, ILADS, Armonk, NY
14. Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
15. Steven Phillips, MD, ILADS, Wilton, CT
16. Arthur Weinstein, MD, Washington Hospital Center, Washington, DC
17. Raphael Stricker, MD, ILADS, San Francisco, CA
18. Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY
Great……hope my daughter is still alive by then…..and we don't go bankrupt during that time. Geesh
I tried to volunteer for the Fallon study, but was rejected because I am not sero-positive per the CDC.
I guess e.m. rashes are not enough.
This is a fabulous listening experience!
Does anyone know to what extent all this is going to be made available in written form – testimonies and slides? And by when? I think we will get even more out of it as we have more time to look at the slides.
So many great speakers!!
Prize for the worst: Phillip Baker for stating that Lyme disease can be cured in 30 days. Can't be proven at all at this point.
I lost feed on Barbara Johnson explaining why two-tier testing is so wonderful. Did everyone lose the feed? I'd still like to find out what her testimony was.
One simple point: even tho they all talk about the important significance of an early EM rash, I can't count the number of people who have told me that their initial rash was dismissed by medical professionals they saw.
My point being: more than simply understanding of the usual evidence for recognizing Lyme is the behavior of medical treaters who seem to say anything and everything to get a Lyme patient out of the office. This is abuse.
And why doesn't the CDC/IDSA do anything about the fact that medical professionals apply CDC surveillance criteria in the clinical setting?
For example, the rheumatologist I saw refused to read the second sentence of the negative ELISA test he ran on me (even after I was Western blot positive) which said a negative test does not rule out Lyme.
Does anybody else think we should bombard the president with emails and letters after this hearing? I certainly do and am going to.
Thank you, Rosemary, for the list of panelists. Are any of them LLMDs? Or were they all hand-picked by the original IDSA panelists? I know that they interpreted "conflict of interest" to include anyone who treats Lyme patients, but if they are all IDSA-sympathizers, then I think we all know the outcome.
I hope this isn't just a sham.
Connie,
I was born and raised in SW Mo. I started having EM rashes when I was four years old. My mom was told it was some type of excema because I had so many of them.
Needless to say I am now have full blown neuroborreliosis and I am 41 years old.
Dr. Master's was given no respect by the CDC.
Re: Dr. Barbara Johnson's (CDC)statement that LD is considered a "rare" disease. I hear this from other CDC and public health authorities, too. This perception, I feel, is symptomatic of the very narrow surveillance criteria the CDC uses to define infection. They lack the greater picture, and therefore, propagate the belief that Lyme disease's prevalence is low in so many parts of the US.
I am so grateful for all the work of those that have made this presentation available by web, and thank the presenters for their invaluable and persuasive information.
Here comes Dr. Donta. A moment in history; a man vindicated. Where once his voice was silenced; now, he will be heard by all. My cup runneth over for this dear one. Blessings.
Robin, the archive of this day will be available on the ID website for a period of time. A CD is being made; but I am not sure of the 'rights' and legal outcomes for whether it will be made available to the public.
Phyllis, do you know that one?
Blessings.
A call for action for a presidential investigation into conflict of interest problems within the CDC?
they are back
I thought Allison Delong was great. Even in Ireland we are told that treatment is ineffective after more than 3 months 'according to studies'. I know they are referring to the Klempner study which every ID consultant feels compelled to follow when deciding their treatment protocol. To have a statistician pull apart the complete Klempner study was great and will give me some fire next time I'm told that more than 3 months in worthless!
Regardless of whether you like him or not, Dr. Donta is a fantastic asset for us with CLD!
His knowledge is awesome,factual and precise.
Bless Dr. Donta – I really appreciate what he is saying about the role of testing,and insight into meds.
Hey, Shapiro isn't supposed to refer to other presenter's talks. He's breaking the rules, trying to lessen the impact of Volkman's convincing presentation. Panel chair is notably silent.
On what does Shapiro base his 36 hr/72 hr timeline?
A great LLMD told my Lyme-support group that the first thing a tick does is inject (regurgitate) its anti-coagulant and analgesic fluid which contains a stew of bacteria, including Bb. This is immediate upon the initial bite, not 72 hours later.
I hate this man.
How insulting is Shapiro? We as patients don't know what we have or are feeling? This guy is crass. and Doctors are the problem? All this is a problem because of the ridiculous outdated IDSA guidelines.
to keep your own record of pertinent power point slides..
1)open a new word or works blank document
2)press "print screen" button on your computer when you want to save a slide
3)rt click your mouse on your word doc and select paste.
4) go to end of slide on doc and press your enter key to be ready for the next slide on a new line. save your doc
waflle, waffle, waffle! Now we all have medically unexplained disease and it's the doctors fault – huh?
I wonder if the panel will notice that the comment made to Dr. Donta re: spect, that "no one on this panel thinks these people aren't sick"
But here again we have Shapiro et al's contention that most of the lyme community has a psychiatric problem, mirroring Wormser's "aches and pains of daily living".
MUPS (Med. Unexp. Phys. Symptoms) means "we can't explain your symptoms". Kind of like a fibro or CF diagnosis.
I don't see how any of this is relevant to the question of how to diagnose and treat Lyme disease.
Shapiro is missing the point that many doctors are unable to diagnose Lyme Disease BECAUSE OF HIS BOGUS GUIDELINES. He's blaming the doctors instead of the guidelines they are required (by insurance companies) to follow.
Shapiro does not know about understand parsimony.
That, by definition means he's not using the scientific method
See above
Shapiro!!!!!!
This guy is very carefully very sarcastic!!!!
I can't stand this guy. His crassness is really getting to me!!!!
Pull the jerks license to practice!!!
Thanks to Dr. Shapiro, I can add "medically unexplained syndrome" to the list of diagnoses I've received. Arthritis, chronic fatigue, fibromyalgia, psychosomatic syndrome….
Interestingly, the only thing I have tested positive for is Lyme. I need antibiotics, not Dr. Shapiro's sympathy!
One thing that is very interesting is how defensive, insulting and unprofessional Dr. Shapiro is towards other doctors and scientists who do not share his biased one sided narrow views. Couple this with his belittling attitude towards chronic lyme sufferers. According to him, all of us chronic lyme patients and our doctors who treat us, are all a bunch of idiots and he is some sort of all knowing God. If that were so, then there would not even be a hearing today, would there?
Shapiro has such a severe bump on himself!
He's even telling the chairperson who wants to ask a question!!!!
Dr. Fallon!!!!
I was one of his 37 "family" members.
He was not only my doctor in charge of the study, he has become a close friend of mine since that time.
He is such a great man. He cares about us and gives so much of his time to trying to solve our devastation!
I personally do not know how he kept with it and finally got his results published.
He is a wonderful man,doctor and advocate for LD.
I love this man!!!!
"medically unexplained symptom" is synonymous with somatization = mental in origin. same story, different day Dr. S!
Looking forward to question time with Dr. Fallon, may give us a hint about committee thinking.
For what it's worth:
I went through 2 years of treatment after many years of chronic Lyme or "medically unexplained syndrome" or whatever you want to call it. This treatment included three different iv antibiotics, and many supplements and oral medications. I had to quit working and attending college to undergo the treatment. It was difficult, expensive for my parents, and I did end up suffering from gall stones for almost a year before anyone realized what it was and finally removed my gall bladder. Still, I would recommend iv antibiotics and I myself would do it again if I had to because of how much better I feel now.
Two points I want to make.
1. My prior PCP would only treat me with 60 days of low dose doxxy sighting the Kempner study and the IDSA guidelines going as far as sending me a hard copy of these to justify her innaction.
2. I know for a fact that my western blot confirmed lyme disease has not been reported to the CDC
has any of you listening been added to the CDC count of lyme disease patients?
Has anyone talked about or considered in their studies the cyclical nature of the disease? Why does nobody discuss continuing treatment past that first relapse of symptoms?
I wish there was more about oral Abx – so far, except for Donta, the idea that in neurolyme it's got to be either IV Abx or none has gone unchallenged.
Using orals, the objection that treatment is dangerous could be much more easily countered.
Doesn't mean that IV is never indicated, just that jumping from no treatment to IV without considering orals is setting up a false black-white dilemma for both patients and treating physicians.
I called an ID doc early in my Lyme odyssey and he said very brusquely,
"There is no place for oral Abx in neurolyme" – in other words, either you're desperately sick and need IV, or whatever you've got, it's not neurolyme.
Lorima PhD
Is Sood for or against us? I am confused.
Dr Shapiro stated that the occurence of Lyme disease in Europe is far greater than in America. Might that have something to do with reporting standards and procedures – as well as the differences between health care in America and Europe?
Can't figure out which side of the fence he's on. HEDGING!!!!!!!
If he means to be for us, he sure doesn't seem to be doing much good.
Is this guy for real? Mosquito bites not tick bites? I saw and removed 3 deer tick and produced e.m. rash.
My doc said "you 'think' you were bitten by a tick."
It is this kind of doctor, who thinks he knows more than the patient, that causes Lyme Disease to go chronic.
recommended summary of the guidleines:
LD – don't bother treating it
Sood is arguing for things being cut and dried to make things easy for physicians. It would be nice if Lyme were that simple.
Dennis D,
I think Shapiro said NEURO-lyme was more prevalent in Europe.
And yes, I think it's due to reporting and perception.
Although I don't think it's much easier to get diagnosed and treated in Europe than here.
I don't care for him! He gives an appearance of really not wanting to even be there. Arrogant!!!!
Diagnosis – Anxiety Disorder? GRRRRRRRRR!!!!!!!!
Trouble is, his presentation skills are impressive, and as this panelist said "thank you for your superior presentation". There has been a clear bias which I am very unhappy about.
Sood NOT for us. symptoms pschological.."anxiety disorder"
Tina Garcia, Lorraine Johnson, David Volkman were terrific. Allison Delong – holy cow! Clocked them over the head with the studies they used to support the guidelines. Shapiro was the same old, same old – we all have psychosomatic issues, no persistent infection.
identified deer tick? ????
duration of atttachment????
About Sood:
I missed the part about how he knew the patient's positive IgM blot was false. Anyway, he's worried that she won't get treated for her "anxiety disorder". I don't know why – she can get paxil or an SSRI at most doctor's offices, and I don't think talk therapy is likely to help.
One of the panel members just thanked him for his "superior" presentation.
Guess we know where than panelist stands.
Absolutely agree Lorima.
Liegner = one of the good guys.
Give the guy a glass of water!
Lorima – I think you hit the nail on the head about where the panelist stands
A great presentation from Liegner. I hope the panel is actually listening and paying attention.
Thank God for Ken Liegner !!!
My impression is that this conference will accomplish little. The panel and speakers enunciating the IDSA treatment protocols don't seem terribly interested in proponents of the ILADS point of view. In spite of the significant evidence they have provided today, those with the opposite viewpoint essentially pretend that no other point of view exists. It's very strange, almost surreal. Dr. Sood had the temerity to cite one patient that he determined had an anxiety disorder because the antibiotics she had been prescribed didn't improve her condition. No mention of how long she was treated, the possibility that they were not the right drugs for her, etc. And because he is publishing a textbook with 23 other "scientists" with similar points of view, those who differ aren't as qualified as he is. What's most telling is that IDSA proponents do not present very much evidence in support of their position, rather they assume the other side is not credible because there isn't enough evidence based medicine to cast doubt on their point of view. Dr. Shapiro has no doubt that there are patients suffering and wants more efforts devoted to determining what is really wrong with these patients. I did not hear him volunteer for such an endeavor. His "interest" in those who are suffering is pathetic in its insincerity.
My impression is that this conference will accomplish little. The panel and speakers enunciating the IDSA treatment protocols don't seem terribly interested in proponents of the ILADS point of view. In spite of the significant evidence they have provided today, those with the opposite viewpoint essentially pretend that no other point of view exists. It's very strange, almost surreal. Dr. Sood had the temerity to cite one patient that he determined had an anxiety disorder because the antibiotics she had been prescribed didn't improve her condition. No mention of how long she was treated, the possibility that they were not the right drugs for her, etc. And because he is publishing a textbook with 23 other "scientists" with similar points of view, those who differ aren't as qualified as he is. What's most telling is that IDSA proponents do not present very much evidence in support of their position, rather they assume the other side is not credible because there isn't enough evidence based medicine to cast doubt on their point of view. Dr. Shapiro has no doubt that there are patients suffering and wants more efforts devoted to determining what is really wrong with these patients. I did not hear him volunteer for such an endeavor. His "interest" in those who are suffering is pathetic in its insincerity.
my new computer froze and had to be uplugged. Lost 8 minutes of broadcast.
How do you connect to the actual ongoing panel of presenters
Speaker list is here:
http://idsociety.org/Content.aspx?id=15026
What is supposed to happen at the end of this hearing? Are they going to discuss whether or not to change the guidelines?
About oral vs IV: My husband and I have both greatly improved from late Lyme on oral Abx. We chose them because we decided it would probably take years, if ever, to cure, and that years of orals would likely be more efficacious than months of IV, as well as safer.
We both had neurolyme, dx in 2007. We had had it since 1990 and 1999 (when lyme was ruled out due to negative ELISA).
We've both been treating with various oral Abx for 2 years, and the insurance co. hasn't complained. (They pay for the drugs, we pay for the LLMD).
We've had no side effects whatsoever. I stopped Abx once but relapsed and started up again. Still no side effects.
But here's Liegner, again only talking about IV. Again, I'm not anti-IV, just think it's not the only way to go. Depends on the circumstances and patient choice.
Dr. Liegner! Thank God. What a presentation!!! I just hope everyone on the panel is paying attention!
The man is a Prophet!!!!!
Thank you Dr Liegner for confirming vasculitis as a Lyme symptom and the use of Hyperbarics for treating Lymes.
Dr. Sam Donta – a number of good points and thought provoking questions for the future.
Why not report all the Western Blot bands, are physicians not capable of determining if the patient is really sick? Need to go back to reporting all bands.
Rarely have Western Blot negative and positive Elisa
But often there is Western Blot positive when ELISA is often not positive
Brain spect scans are pos. in about 75% of Lyme patients given the scan – these are select as they are the ones who report their brain is not functioning as well or my mood, etc.
Spect scans are reversible in patients who are improving
Negative spect scans does not mean they are healed or cured, but is a soft sign.
It is not enough that Antibiotics are sensitive in vitro, antibiotics must get to “where the action is.â€
Without knowing if there is persistent infection, people tried various antibiotics and came up with interesting and sometimes varying responses.
Many questions: How come Azithromycin not very effective, how come tetracycline worked well (in 80s study) and erithromycin not? Does that mean you stop there?
If it was a Cancer treatment trial, would researchers say “Oh I guess that didn’t work†and quit?
Suggests that high protein-bound levels of Doxycycline may not be enough free drug to diffuse into tissues and if there are intracellular organisms, it makes more sense that tetracycline would work better – not as much of the molecule is protein bound.
Ceftriaxone is effective in vitro. Effective in treatment of 4-6 months, 8-12 months.
After 12 months, the lasting effect slips and more patients don’t maintain improvement than tetracycline patients, who maintain their progress better in comparison.
How does one analyze that? Why should Ceftriaxone have ANY activity? We know from experiments in tissue culture studies, when you do those studies, Ceftriaxone doesn’t do anything to intracellular bacteria, whereas Tetracycline does.
He suggested we know from Animal models in Lou Gehrig’s study that the agent interferes with glutamate receptor – is there similar situation in Lyme where as part of neuropathophysiology, glutamate accumulates and becomes toxic?
Is ceftriaxone working as an anti-neurotoxic agent/
Macrolides in vitro are very active, spec. erythromycin, clarithromycin, not in vivo whereas MICs are very good.
Macrolides were found not to work very well in an acidic environment.
Amantadine does help reduce the acidity but is not as effect as hydroxychloroquine
When the IDSA revises guidelines, the guidelines need to reflect what what we know and what we don’t know
IDSA use more media to promote their ideas more widely, make more friendly handouts with their information for the public.
Dr. Shapiro: Predictable, instractable.
Dr. Shapiro (who did not stay for the duration of the hearings) presented a regretable and demeaning picture of patients who essentially imagine their disease and the misguided physicians who treat them.
He continued to speak of Medically Unexplained Symptoms as being the true status of those who claim they have Lyme disease.
He suggested that the previous Chronic Mononucleosis calls they used to receive had stopped, now guesses the these have morphed and the new popular condition has become Chronic Lyme.
He seemed to snicker when referring to the Fallon study, and “what HE calls encephalopathy†as if the term encephalopathy itself was voodoo.
He was asked and said he stands by the grading of evidence.
Of the Klempner study, he defended that sample size was small because it had a predetermined outcome, according to an independent biostatistician, the study should be stopped because chances of finding a different outcome at at the end were only 3%
One panelist said one of his statements seemed like it would raise the ire of people who are suffering
okay here we go.
NW Penna here! Great presentation so far!
Great job, Dr. Liegner!
JJB
Sorry, the statement previously that "IDSA use more media to promote their ideas more widely, make more friendly handouts with their information for the public" was from a later speaker, not Dr. Donta
I found a tick attached to me the morning after turkey hunting April 01 2008.I live in Knoxville Tn.and Lyme Disease is not known to exist in our area according to the CDC.I developed the rash at the site of the bite that lasted for approx 5 wks.It was warm to the touch and often itched as it began to disappear.I did not seek treatment until I returned from a trip to Croatia at which time I was having severe pain in my right shoulder.I went to the doctor and he said I had a pinched nerve since the pain was radiating down my arm and he prescribed me prednisone.After about 5 days on the prednisone I was watching tv and in about 45 min time the pain traveled from my right shoulder to my left and to the balls of my feet.I got on the internet and did a symptom checker and Lyme Disease came up and it was my ahah moment.I remembered my tick bite and called the health dept.but they said that we dont have lyme Disease in this area.I proceeded to tell her off in a nice way and she said if I was so sure I should get treated with antibiotics and it would take care of my symptoms.I took 400 mg Doxy for 30 days and 200mg for an additional 30 days at my demand to my doctor who felt this was overkill but he prescibed per my request.I had researched this disease and was not going to follow the path of others since it appeared that the guideline recommendations were not eliminating this disease.Up till now I have had approx 60-70,000 mg of Doxy and each time I try to quit my Doxy after a few wks my symptoms return.Brain Fog,Fatigue and arthritic pain.I can control my symptoms with Doxy but I dont believe it will cure Late Stage Bb.I have no insurance and am thankful that Doxy is a cheap antibiotic.I dont know my future but I hope this meeting will bring about new research and hope.This bacteria is hell on earth for those of us that have it within our body and most of our stories and symptoms are the same.It amazes me when these educated idiots like Dr. Shapiro spew forth their ignorance and opinions that are just that an opinion and we all know about opinions.It is tough to kill this bacteria once it has gone throughout your body and brain.Sorry for rambling but I felt the need to tell some of my story and This may not have been the time or place but I wish you all well and hope we can beat this bacteria.
Incredible job by Dr. Leigner.
Steere is talking about 30 year old information. Same old, same old. Late neurologic involvement is rare with positive Bb. I love presentations when the presenter just reads their slides…
Here goes Steere; Oh great, he's pushing orals – I forgot to say, in my praise of orals, that high doses, long regimens, and a variety of Abx is key.
Is anybody else finding this all very depressing? Is anybody really listening to the REAL evidence?
zzzzzzzzzzzzz Dr. Steere
Just spewing the IDSA line.
Lorima – I don't think Liegner was talking only about using IV but was making the case for its use as needed – possibly preferred in +3∑ cases.
Dennis
PS – I'm one of them. First IV course four years ago for 6 months -> marked improvement – multiple oral antibiotics -> slow regression, Now on IV Ceftriaxone for 16 months -> substantial improvement.
Ah yes—Post Lyme Disease Syndrome.
2 – 4 weeks of oral? are you kidding? Swollen knee the main symptom?
Basically, he is saying that swollen knees are the only symptom to be treated!????
Wakefield MA here.
Steere is a putz
Do you think any of the panel members will ask him if he has any recent research?
Lyme neuropathy is NOT minor. I have spent weeks in bed…
Heyyyy has wormser talked yet?????? What did Cameron say??????
Steere is putting me to sleep…and he doesn't seem to be doing anything but repeating "old news" about the studies. Common panel, wake up and smell the coffee! IDSA is NOT giving us new information.
Has anyone ever been cured with late stage Lyme Disease and was long term iv antibiotics the choice.
Yes, thanks for pointing out need for keeping IV option always available. A variety of options should be widely available to patients and Drs.
Love this patronizing tone Steere has – I never had the "privilege" of hearing him speak before.
I wonder why it isn't more widely known what he did regarding the vaccine, and what the results were? You'd think that would have discredited him forever.
Wormser is last.
I have lyme -bullseye included- blood tests negative. This has been going on since 1998, I was also diagnosed with ehrlichiosis-which back then I was told did not exist here. I have numerous health issues, no answers . As of this time, I will be going back on IV therapy
this is crazy. I can't believe the things these people are saying.
If we don't test positive in only a way that "they" see fit than we are not sick? how can they say this. yea I guess that thousands and thousands of people are just faking
some, most, the majority of, etc etc etc
Classic Steere…..
Four weeks.
He is so full of it. Oh well we knew that already.
What about the person who is sick for years and never gets the diagnosis until way after the initial exposure?
What about the person who is sick for years and never gets the diagnosis until way after the initial exposure?
Steere is evil.
So he asks for response to 10 bands, but admits that it takes 4 weeks to develop response to 5 bands, but treatment is more effective if given very early.
Dr. Fallon: a very carefully thought out presentation of his study of longer term treatment and another significant study which focused on fatigue.
Dr Fallon began with "Is there evidence that repeated ABX therapy may be useful?"
He believes there is and presented a thorough case for this, point by point, using his study and those of others.
He established that he was not a member of IDSA, but member of the American Psychiatric Society, established his expertise, and said he hopes the panel will uphold his credentials since he says it is related to the Chronic Lyme story.
He spoke of considering the efficacy and usefulness of treatment vs. the strictly clinical picture, relating to what studies purport to represent.
He referenced that study on fatigue showed repeated antibiotics is helpful, and presented his own study in detail.
His study did have a small number of adverse reactions, that prolonged antibiotic treatment is effective but carries risk, so what is next?
He suggested one possibility is better antibiotic with a better safety profile. That physicians work to better identify who might be at risk. That there be a careful discussion between physician and patient of risks and benefits since most treatments in general have risks.
He stated that the two studies showing positive response to antibiotics were homogeneous and thus more likely to show differences and treatment effects
(including Krupp study on fatigue).
His study referenced the working memory deficits and reports of functional disability with longer term patients (prior to treatment).
The Klempner study was heterogenous and thus less likely to find differences.
He gave a very scholarly and informed talk which seemed to carry weight with the panel.
Dr. Sood (pediatrician):
One long commercial for his new book; he characterizes it as the first clinical textbook in 11 years on adult and pediatric Lyme disease. He found no evidence of conflicts with IDSA guidelines in writing the book with 24 contributing authors. Found the IDSA guidelines to be truthful and accurate.
Basically 20 minutes of fawning over and agreeing with those most likely to buy his book, taking advantage of a free forum for national publicity.
He stated IDSA should use more media to promote their ideas more widely, and make more friendly handouts with their information for the public to more easily understand their guidelines.
He spoke of/made extended sport of, an "anxiety disordered patient" who went to an LLMD and was needlessly subjected to longer term treatment.
He could not seem to make the patient or her family understand that she was really not sick or suffering from Lyme disease.
He referred positively to Barbara Johnson's term of a "Self-enforcing circle" of patients who mistakenly continue treatment with physicians who reinforce their false illness.
Panel Question to Dr. Sood: Does the film "Under Our Skin" ring true on pediatric representations, one is fetal loss from Lyme Disease during pregnancy, the other is Congenital Lyme disease in infants.
Response: In one chapter of his book, he looked at evidence, including initial reports of what were thought to be spirokete structures in what were thought to be SIDS cases. These reports were not correct. There is no fetal loss due to Lyme disease, there is no maternal vertical transmission of Lyme disease from mother to infant.
His 1-slide presentation/book commercial was termed a “Rather superior presentation†by Dr. Duray.
Incredible.
"late objective nuerologic involvement
really really rare?" He should have the suffering that I and many, many others have from Nuero Lyme.
Is it my imagination or are all of the speakers for IDSA older? and the speakers FOR us younger?
Steere is such a jerk. I have had IDMDs refuse to even see me without positive Elisa and Western Blot tests. No wonder he says they see "very few late Lyme patients." They are screened out and refused medical care.
Amen Connie.
They say that late Lyme is rare, but there is no reliable way to diagnose us early. DUH??
WOW! Philips is introducing dozens of studies!
Hard to follow but great!
Yes lots of good studies. Studies conveniently NOT cited by IDSA.
Phillips – now we're cooking. Love his casual tone, with the devastating data which speaks for itself.
They have no idea how many people are suffering from this disease and I believe the numbers would be staggering if it were known.
Is there anyone there from the CDC?
Dr. Steere: predictable, an almost whiney voice, insisting on the validity of his years of conclusions. For the sake of brevity, see his literature. I was disappointed. Nothing new, nothing striking.
Yes, one of the speakers:
Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
Dr. Liegner's presentation was articulate and while he covered the science in-depth, I also appreciated his common sense advice. In response to the panelist's question as to how to differentially dx, he reiterated "a thorough evaluation" and 'very careful and repeated study of patient'. He reminds me of the doctor in our hometown when I was growing up (50 years ago), when home visits were still made by the family physician. He knew his patients and esp. the children from babyhood. Dr. Liegner went on to simply state that a 'ruling out' of other complicating factors or health concerns was merited and should be part of the differential dx.
He said that direct antigen detection would resolve much of the controversy and believes that some of the methods of detection that were in use and merited further development from a decade ago were credible candidates but the controversy has prevented their fruition.
He clearly warned against corticosteroids while presenting a real human example of the damage suffered by a patient who had been subjected to this treatment.
He covered co-infections and cautioned against the over reliance of antibody assays and nailed persistence to the wall.
He said that general reassessment of anything thought to be true is of the utmost!
He wrapped his brilliant testimony with wisdom when he stated "We have to be humbled before this disease. It is a formidable pathogen".
Blessings
Phillips is giving it to them. He might be monotone but his material is AWESOME!
I think Willy Burgdorfer should have to go before congress and tell everything he knows about this disease and the things he withheld during the interview with underourskin.
Phillips – fabulous.
I agree totally with his conclusions, based on the current state of the literature.
It feels great to hear my point of view so well represented in this forum.
Dr. Phillips is remarkably articulate.
Hooray for Dr. Phillips- His name should be displayed atop the highest mountain. If the review panel does not act favorably after his testimony, then bias is incontrovertible.
Dr. Phillips is my hero. I just loved it when he threw Steere's past research in his face.
I do not see how they can not change their guidelines?
I agree with Lorima that it can be managed with long term antibiotics and I am doing just that but I want a cure and I dont believe the current oral antibiotics will cure this disease.
I am so impressed by and so grateful for the presenters speaking on our behalf! Regardless of what the IDSA does with all this, we have amazing brilliant, dedicated, compassionate people fighting for us. Thank you a million times!
This is out of sequence:
Dr. Liegner began by listing his extensive background and experience, including remaining friends with Dr. Wormser despite diametrically opposing viewpoints on Lyme disease, and asked listeners to walk a mile in his shoes.
He related a significant case, relating several years of care for a patient who was misdiagnosed originally prior to reaching him. He tested for Lyme disease and she was positive. The patient's blood remained seropositive according to CDC, over a year after treatment.
When treated, the patient experienced significant improvement. Spiroketes continued to be found.
When treatment was stopped, her condition deteriorated and thus the cycle continued off and on treatment for many years. Spiroketes continued to be found in her fluids.
The condition was verified in a number of ways including by CDC and I believe he said by Dr. Duray (a panelist).
In questioning, Dr. Liegner said the patient was largely confined to a wheelchair, no pets, and thus the possibilty that she was rebitten or continually rebitten was negligible.
She showed positive results for spiroketes on numerous occasions over the course of her life despite treatment on numerous occasions.
Ultimately the patient could not sustain treatment and fatality resulted.
The presentation was very moving and difficult to hear.
Dr. Liegner referred to a portion of it written up in The Lyme Times, also referred positively to Pamela Weintraub's book Cure Unknown.
He also related other severe cases.
Panelist: Those are obviously strikingly severe cases. Given limitations on testing ability, how to distinguish between Lyme and Lupus, other autoimmune diseases, Chronic Fatigue. How do you distinguish?
Liegner: very careful and repeated study of the patient after time, and clinical judgment, after ruling out other conditions, he acknowledges it is difficult.
He gave a good presentation of the tragedies witnessed as a treating physician in a Lyme-endemic area (NY).
JKenny2 asked:Does anyone know whether the composition of the IDSA team has changed since Blumenthal action?
You can find the names of the original guidelines authors on the published guidelines which are on the IDSA website, http://www.idsociety.org.
After this panel votes on their recommendations, what chairman Baker said was that the IDSA will name a new guidelines panel. At this point I don't know whether there are restrictions on who can be on that panel.
The IDSA becomes the author of these guidlines under their own authority. They also publish guidelines for other diseases, being an association of infectious disease specialists.
Great points Dr. Phillips made regarding cystic form being
a)unidentifiable b/c it doesn't have the correlating outer surface proteins that most tests use as markers.
b) the cystic form require different media to be cultivated in a lab
c) also possible reason for immune system evasion (our immune system can't recognize/activate against them either without those protein markers) and failure to eradicate Bb with ABX.
I wonder (surmise)if all of those points relate to the cell wall-deficient form, too, although more studies seem to be available on cystic than CWD.
I hope someone else mentions the combo's that must be used to address all forms of Bb.
Doug Orrell,
You hit the nail on the head. I have been off and on high dose Amoxicillin for two years, and even though it has improved my neuroborreliosis, after a while I feel myself slowly sliding backwards, like I have developed a resistance. I want a cure.
Yeah, they did have a CDC PHD at how "conveniently" it was that the reception was lost!
Coincidence?
Dr. Phillips – Peer Review Evidence Based King of the Forrest! Excellent!
"treating over 14 years and I have seen patients harmed by these guidelines."
"Several forms of Bb – cystic vs spiral"
I appreciated his detailed presentation and inclusion of in-depth studies that can be studied by each of the panelists and that has been made available to the general medical treating community.
We are very, very blessed!
I am managing to take a few notes between listening capturing images of the slides so I can review them later. We can continue this discussion here over the next few days. IDSA will have the whole show on their website, probably by tomorrow or even later today, so you can review anything you missed today.
Doug, I do feel much better after my iv antibiotic treatment, but I don't believe at all that I've been cured.
I still see symptoms especially when I allow myself to become too worn out or stressed, or sometimes even for no apparent reason at all. I have had to learn how to take care of myself and listen to my body, and put parts of my life on hold when I need to rest.
If oral antibiotics help you manage your illness I think that's about as good as you can ask for right now. I resorted to iv only because my illness had completely stopped responding to biaxin and other oral antibiotics, and my penicillin allergy kept me from being able to try that.
Thank You Connie I was beginning to feel I was blogging with myself and not a part of the click
The most astonishing thing, now listening to Art Weinstein, is how he can talk as though the contrary evidence had never been cited. Others did this, too, as though our side does not even exist on the planet, let alone in the same room presenting to the same panel today! They just plow ahead with their own ideas, completely oblivious to any alternative, like an old horse with blinders.
well said, Phyllis
So, Phillips thinks we are all psycho after our initial treatments?
Doug, sorry to have not answered. I'm afraid the title of Pam Weintraub's book Cure Unknown summarizes my impression.
It's not that no one ever gets rid of late Lyme, but there's no agreement on anything that can reliably bring that about.
I too want a cure. Until that is discovered, I'll settle for treatment.
Re: Weinstein. Useless.
Dr. Weinstein said basically nothing.
Weinstein is a tool. He only knows the dogma for treating chronic arthritis and says just treat chronic pain. Weinstein blames media attention and support groups for the expanding numbers diagnosed with chronic lyme.
It has been proven that Steroids are contraindicated in LD.
No surprise since they are immuno-suppressant.
BTW, I totally agree with you Doug, regarding your comment in support of Dr. Burgdorfer telling 'all' before congress.
Dr. B: I love your comment with regards to Dr. Phillips and I sooo agree. Heart motive would be exposed if one continues to deny these indisputable facts. In fact, in all due respect, I wonder that Weinstein can even continue his own presentation and make eye contact with the members of the panel. They have to be conflicted! He offers no science, and just as Shapiro's overall presentation somehow believes that his voice and his association w/this prestigious society is a right of passage.
He is right that it is the failing of his medical community for not providing for patients symptoms that are not being properly dx,treated and resolved.
I am so impressed with the order of the presenters and how the truth keeps overriding some of the rhetoric.
He is speaking to fibromyalgia as if it were a conclusive treatable disease. Weinstein is speaking in circles without presenting solutions. He denies the possibility that the group of syndromes he speaks of, could be 'rooted' in infection.
Blessings.
Weinstein said that steroids don't work with CFS nor with Lyme because there is no evidence of inflamation?!!
The first duh-ktor I saw refused to prescribe antibiotics, even though I told him I removed 3 deer tick which produced e.m. rash. Instead he threw narcotic pain-killers and steroids at me. MMMM much better. The narcotics made me nauseous and made my headache worse; the Prednisone did help with my severe foot pain, but as all Lymies know, steroids suppress the immune system.
So, yes, steroids did help with the pain and allowed me to walk again, but did not help with the Lyme.
Dr. Lieger, Dr. Phillips, and Dr. Stricker, thank you for awesome presentations!
We are lucky to have you in our corner.
thank you Dr. Stricker for helping me when noone else would. I passed the CDC standards on western blot, but still told by doctors in Ohio that what I needed was a psychiatrist! I was misdiagnosed with Juvenile Rheumatoid Arthritis in 1974 and it took Dr. Stricker to tell me last year it was Lyme…never treated correctly, now late neuro status! Thank you doctors who do care!
Dr. Phillips: WICKED good on a round-up following Dr. Steere. Like the player sent in to bat in the ninth inning with two on base and two outs. WOW!
He referenced the regrettable reference in the IDSA guidelines of the Lack of Biologic Plausibility of antibiotics.
He stated he would be highlighting all the guidelines authors throughout the presentation, then went on to do so with devastating precision.
Spoke of pleomorphic forms, which may explain a long latent stage, and a long-lasting disease. This would explain: Persistence, Seronegativity, Decrease in serological reponse over time, and more. Conversion of spiroketes into forms which evade treatment.
A great speaker to follow Steere, refuted much of what he said and did it referencing his (Steere’s) studies. One patient of Steere’s who passed away, whose brain tissue revealed spiroketes post mortem.
Another Steere patient who passed away after only two weeks of treatment; spiroketes found post mortem. And it continued.
WOW NOTE: Dr. Phillips rattled off a twelve syllable medication in less than three seconds.
He referenced something not brought out by the guidelines: Risks of withholding antibiotics
He then moved quickly and with incisivneness presenting 25 studies of persistence despite antibiotic treatment.
He chastised the IDSA/guidelines/authors for Material misstatement, no, and aggregious misstatement of fact. He stated that patients are and have been directly harmed by these guidelines.
Chair of panel: What about Seropositivity then seronegativity,
A: Cystic forms, and several other forms besides fibroblasts, contribute to this picture.
Altered and diminished outer surface protein, can be easily created in vivo (or was it in vitro?).
It is more likely to have cystic forms over time. Less Outer Surface Protein = shows negative on testing.
Panelist: Is it Biologically Plausible that there is persistent infection? There is no control group so we can’t say.
A: Dr. Phillips states he didn’t present Klempner study as it is quite flawed and could not draw valid conclusions from it.
States he wonders why is ceftriaxone regarded as a wonder drug? It is not and this contributes to poor studies and poor outcomes.
He states that the Risk-benefit ratio of antibiotic therapy including IV therapy must be considered, but vast majority of his patients respond to what are considered very safe antibiotics.
He relates that open trials have exceptional safety profiles for their conditions such as acne.
He was thanked by the chair for a very thorough review and his presentation of the twenty five studies was praised.
Stricker is the man! He has helped me and has been the only Dr. to make sense of my lyme. Thanks to him I am still able to work. Go get em doc!
Oh, man I don't know if I can stomach Wormy boy,
re Wormser presentation in progress; what about Laboratory diagnosis of lyme disease contracted abroad?
C'mon Wormser – don't just go over what you've published that is in question. Tell us how it's not impacting people negatively now.
If you are sure you have Lyme Disease in my experience NEVER NEVER NEVER take PREDNISONE it made my Lyme Go into Hyper Mode.It was however what made me realize and research my illness.I was almost suicidal with pain that was undescribeable before taking 400 mg of Doxy for 30 days right after realizing what was wrong with me.It was 5 mos after being bitten that I remembered my tick bite and rash.The herxheimer reaction was unbelievable and I would have freaked out if I had not understood what was happening.Im and adult and it breaks my heart to think of a child suffering with this disease.Basically I believe I know as much as some of these educated idiots on Lyme.The case map is so much BS because I know many of several people in my area with Lyme and their case nor mine is included.Just like I told my doctor when he said we did not have Lyme Disease in Knoxville Tn .I said yes and Canada thought they didnt have it either for years like it would just stop at the border and they ignored all the cases bordering Canada.Lyme Disease can be contracted in areas that are not now known to be Lyme positive because so many cases are misdiagnosed as fibromyalgia or chronic fatigue or arthritis.Because the testing is so poor they have no idea whatsoever how rampant this disease is.
Dr. Weinstein: The Voice of Mainstream IDSA.
Is it Biologically Plausible that there is persistent infection? For patients who have persisting symptoms.
It could be Relapse, incomplete treatment, or patient rebitten.
He observed that Patients improved from original illness, symptoms did not correlate with what would be expected of infection.
He settled on Post Lyme syndrome. Much time and energy spent by many, considering whether infection persists or not, whether extended treatment helps or not. Stated sadly robust supportive evidence of persistence is lacking.
Stated Post Lyme syndrome is a pain syndrome, arthralgias, neuralgias, pain, symptoms which wax and wane over time, very debilitiating. Some similarity to fibromyalgia, incl. by Dr. Steere. However ratio of fibro 9:1 women to men, no such ratio in Lyme Disease.
Fibromyalgia only diagnosable in 30% of patients with “post-Lyme.â€
Findings similar in spect scans and others to Fibromyalgia patients.
He feels there is a narrow specialty which explains similar conditions based diagnosis of patients irritable bowel, fibro, lupus, Lyme disease.
They have more in common than seems to be suggested.
Very common – common widespread pain occurs in up to 10% of population, 2% fulfills definition for fibromyalgia, consists of 20% of appointments.
Symptoms wax and wane, are chronic, are severe as cardiac symptoms. May be exacerbated by other conditions such as infection. But often associated with psych co-morbidity expressed as anxiety and depression and more in this vein.
Primary predisposing factors are history of somatic disorders going back possibly to childhood.
There is much Symptom amplification (psychosocial factors, disease labeling, name it an illness, stress, secondary gain (!!!) by this claiming of Lyme disease).
Terms this a Functional psychosomatic syndrome. Says there are no signs of inflammation, structural damage, or active infection. But Symptoms are disabling on SF-36 test.
Patients with “Lyme disease†have more pysch comorbidity than those who recover.
Their symptoms are refractory to recovery, and wax and wane over time.
There is serious amplification (by patient of condition) due to disease labeling, including facilitated by advocacy groups, media, sympathetic physicians, other.
Inability to effect symptom relief is only blame he will accept.
Arrive late at this correct diagnosis.
Agrees with IDSA guidelinees against longer term treatment.
Borrellial infection is not the cause of THESE symptoms and not the treatment of choice.
Disagrees with Post Lyme syndrome as unique and specific syndrome.
Believes studies will show somatic syndrome, approp. Treatment should be for that..
Panelist: Relative to this recategorizing: You are a rheumatologist. Are you suggesting these syndromes all be put in a larger category (note, this included irritable bowel syndrome, fibromyalgia, Lyme disease, post=Lyme and more).
A Similar and overlapping complaints, should all be studied in one study [ translates as = throw all the loonies in one bin].
Q What about signs of inflammation
A. I don’t pretend to know all the etiologies. These patients have a history of somatic complaints dating back to teen years or early childhood. Turns into Lyme disease or aches and pains by their fifties. Go back into early history and you will see somatic symptoms even back then.
I don’t know why people get pain in their bowels or other problems, chronic aches and pains, but I don’t think this is the only symptom they have.
PANEL: dead silence, I interpreted this as shocked silence.
Then after a pregnant pause, a quiet question asking are there other attempts to study these as one group.
A: Yes, not me, someone else.
In general steroids infective in treating fibroyalgia. Guess they would be in Lyme. There is no evidence of an inflammatory basis for these conditions.
What is going on here????
Just stop and think, 9hours of presenters pro and con getting up and giving their interpretation of their "beliefs"!!!
If we had AIDS,Cancer,Parkinsons or others, we would not be going thru this whole "ordeal"!!!
We would be put on a treatment protocal with no questions from any in our "superior" IDSA etc.
Why do we as Chronic Lyme Disease not only have to suffer from the disease itself but also THE BS that comes from these "so called experts"!!
I am very surprised that there is not a higher suicide rate of "our family"!!!
For God's sake, just get together,find a common cure and help us out. Why are we left out like we're lepards? Why are we made to feel that we're "crazy"!!
Believe me, after suffering from CLD for over 17yrs, there have been many times I actually thought I was "MAD"!!!!
All I can get out of this whole ordeal is that it just keeps going on and on and never resolved. Its just comes down to almost like children misbehaving and then the "he said, she said" and "I'm taking my ball and going home"!!!
I just can't take this crap anymore. I have resolved myself to the fact that I will have this disease for the rest of my life and I will never get to be any better and my "quality of life" is really very low.
Maybe if just one of these so called IDSA experts was struck down with CLD and they faced life as we do,maybe, just maybe,there might be some change.
I just wish that any one of these idiots would have to face just one week of symptoms that we suffer every single day. I guarentee they couldn't take it!!!! Each and every one of them need to have a major wake up call.
Wormser makes me sick,Steere makes me sick,as does Baker and Shapiro!!!! Wormser or as I love to refer to him as "The Worm"!!!
Wormser drives me crazy. Who is he seeing in these "studies" of his. Certainly not me or people I know.
Going back to Dr. Sood: He clearly revealed that primary care doctors/pediatricians, etc.. are not informed. In his words: “Busy practitioners just do not read them†(guidelines and the science) (patients?)
He also infers that less treatment be applied for pediatrics. As a mother of a once bright, articulate, creative young girl in the later years, who by age 15 arrived to the place where her immune system became so suppressed that it took years to get to the root of the culprit (not withstanding Cranial Nerve Palsy, Menningitis-like symptoms to name just 2), I am offended by this man’s presentation and presumption that his omission of treatment is protecting children.
Had she been differentially dx and treated early, the co-infections and borrelia (that over time showed up one after another as her immune response began to wake up after 3 years) would not have been permitted to permeate her brain and every system in her body complicating her very health and well-being.
It is only by God’s grace and in the hands of a brilliant team that we have her with us today; but I will never forget the nights when she lay paralyzed, in seizures, in pain and near death b/c of so many complications. While she has miles of the unknown to go in her journey, she is beginning to make strides. She misses the full use of her brain. By Sood's standards, she does not merit treatment for her obvious, multi complex and multi system symptoms even though an ongoing differential diagnosis was addressed as each domino fell. She should, like so many of your own children, simply be out there enjoying her teen years. I hope the panel saw through his presentation.
Wormser, Steere, Weinstein and others referring to it as "Post-Lyme disease symptoms" (aside from displaying their clear bias) reminds me of the hard line GOP politicians who insist on referring to the "Democrat Party".
I am feeling like there is not enough UMPH to this Hearing. It was built up and it feel just like…. there is not much enthusiasm or clear cut statements that are Pushing for a BIG CHANGE!!!
SCRAP IT AND START OVER!!! I say!!
Instead of picking on or apart this little part and that part and bit by bit etc..
Sit at the table and restart and pull together new guidelines!!
Dr. Wormser's comment about post Lyme syndrome included the patient's "pre- infection emotional state!" Pre-emotional state?! Are you serious?
Some people may wonder about his current emotional state.
Ha ha, totally agree LymeRidden!
why are we letting Steere talk again…..?!
The Panel is clearly IDSA-biased, allowing the IDSA gang additional floor time, asking sympathetic questions. The questions aimed at the ILADS speakers seemed almost hostile by comparison.
Pre-emotional state?! – Yeah that was as good as the statement about "publicity causing people to believe they have Lyme"
MD, thank you very much!
Dr. Stricker considered the question of whether the guidelines need to be revised.
He emphasized the systematic errors and misleading statements in IDSA guidelines with examples of percentages used in the guidelines of overstatements, and more reasons why the guidelines need to be revised.
He gave a careful review of the inadequacies of testing, primarily, in a form that would be clearly understood including by those not familiar with the intricacies of testing and brought in many other points. This is an important aspect for guidelines that over-rely on testing.
Science does not support the inadequate testing for Lyme Disease supported in guidelines. He made the case that prolonged Treatment is plausible and safe, and that lack of needed treatment is a concern that is not addressed in the guidelines.
Panelist: You mentioned clinical judgement, how do you diagnose with clinical judgement?
Stricker: There are a number of symptoms. There is a difference between “screening for Lyme disease†and the patient just back from Cape Cod who has features and presents with evidence of Lyme disease. This is where a physician needs one’s clinical skills to diagnose.
There is testing endorsed by CDC and IDSA supported by Ingsgrom and Dressler studies (spelling?).
But there are other other studies which support a different diagnostic criteria, done by other labs with high specificity, sensitivity, other tests coming along and referenced.
Dr. Wormser: clearly annoyed at the criticism and uproar over the guidelines.
Short version: Much defensiveness about why the guidelines are really valid.
Regarding coinfections: Klempner looked for coinfections, seemed to say did not detect. W. stated effects are unlikely.
Panelist asked Could guidelines be improved or should they be changed?
Yes, in the future, add some language about Babesiosis, maybe a little bit more treatment when this is found.
In general regarding Lyme disease, there is now another Study in press supporting his viewpoint.
PANELIST: Groups feel alienated by content and language of guidelines. What is feeling and can language be modified?
W: Yes. (One word answer – interpret this to be that this will grudgingly occur?).
Chair: such as nitpicking over grammar, "vast majority," 2/3 vs. over 50%.
No other questions for Dr. Wormser.
Lyme activists are chatting on Twitter as we speak: http://www.ustream.tv/channel/onthemarcmedia
Please join us in trying to get Lyme as a trending topic!
I feel like ive wasted my time watching this and feel like this will go nowhere.I would donate my body to science if it would help cure this disease.I would like to put up my email address orrelldouglas@comcast.net if anyone would like to share success or failures while on this journey we seem to be on alone.I will respond as soon as I can and I feel we will have to make much more noise to be heard than what Ive witnessed here today.I guess only if Obama gets bitten at Camp David and goes untreated for mos. will we see any headway on our situation.I wish you all well and hope and pray we get a cure soon
The CDC is "developing" a new panel? Barbie admitted there were problems with the current panel.
Then why are LLMDs being destroyed based on whether or not they use the required 2-tier test that is flawed?
In the bit of time left, some questions for previous speakers.
What did Dr. Steere think of what Dr. Phillips related about Steere’s studies as showing persistence.
Steere: I would explain it somewhat differently, particularly point out it would be a sentence from a study done 20 – 25 years ago……. etc.
Panelist: Why, when guidelines say physician judgement is allowed (in the disclaimer), is there a questioning of these guidelines. **When there is clearly no financial gain on the part of the authors to be realized from these guidelines?**
Lorraine: The guidelines are being relied on to deny treatment out of hand.
Chair: Many physicians would be opposed to having non-medical people tell us how to practice. [Implies collaboration occurred with passage of CT doctor protection law although not explicitly stated, or maybe is expressing resentment at the role of the Atty. General from CT]. Incredibly, the chair suggests there should be collaboration between factions instead of passing legislation. (How about collaboration instead of passing overly restrictive guidelines?)
Barbara Johnson doesn't know that Klempner's lab manager admitted to keeping the urine specimens for weeks in the refrigerator prior to shipping them, completely contrary to the protocol for the urine antigen test. Needless to say this information also was not included in the article discrediting the lab for inconsistent results on those tests.
Stricker showed that the FDA admitted that testing was not reliable.
The two tiered tests yield high specificity but are seriously lacking in sensitivity.
Dr. Stricker just totally blew Dr. Johnson’s (CDC) presentation to pieces by using her own slides from 2006 in his own testimony (POW!) to show that the two-tier testing is truly flawed. She has changed her position obviously and….forgot that she once recognized the limitations. (Ouch!) Her fairly robust study was 62% – inadequate for diagnostics. (Double ouch!)
LD is zoonotic and these organisms tend to be persistent in nature. Unlike another physician presenting today,who states it is highly implausible for persistent infection, Dr. Stricker presents science that clearly adds weight to the real plausibility (BLAM!).
The problem with Dr. Wormser’s study regarding limited therapies, is that it is unsupported by science, per Stricker who also subtly stated that Wormser is ‘fond’ of including this particular slide in his presentations. (ZING!)
Stricker arrived on the scene in his batmobile as the Caped Crusader! Gr8 presentation!
“You have to make a distinction between screening and a patient who has just come back from vacation in a known endemic area. There are tests that CAN be done; but as the CDC states it is a clinical dx.†He spoke to ‘other’ testing that offers a high sensitivity and noted that new tests are coming along, alluding to Dr. Luft’s work in the works now.
Dr. Baker should be addressing her concerns regarding an updated map for reported ‘case’ maps to Dr. Johnson, not Stricker. Another sway moment.
TY and three cheers to Dr. Betty Maloney for your investment into Dr. Stricker’s presentation! You were there!!!! And you are a brilliant physician and educator and a blessing to the Lyme community! And to this S.Central PA family!
It's unfortunate that people use the blanket term "seronegative" which implies the patient has no detectable antibodies to Bb. Actually, when the IDSA guys use it, they're almost certainly talking about anyone who doesn't meet CDC criteria on two-tier test.
Which, as we all know, is entirely different from being devoid of detectable, specific antibodies to Bb.
So it ends up sounding like there is no easily obtainable, objective evidence of past or present Lyme infection in these patients.
But actually if one could just see the complete IgG and IgM band pattern of each patient, there would be MUCH more evidence. As Donta suggested, Why are we throwing away information?
Are doctors really so fragile they can't handle the concept of specific and non-specific western blot bands?
I don't know whether each ILADS-friendly speaker is using "seronegative" in the two-tiered sense, or in the stricter sense that the patient has no Bb-specific bands on their blots.
On another subject,
Thanks to Indomitable for the pithy summaries of the presentations. Very helpful and skillfully done.
Lorima
Stricker asked by the Chair to comment on diagnosis and treatment and comments heard in the last 15 minutes or so.
Dr. Stricker precisely and succinctly stated that Barbara Johnson’s answers ignore what he has shown about the problems in testing. Says “it is broken, it is broken, it needs to be fixed.†And that therefore the Guidelines are incorrect and need to be revised due to the overreliance on testing which is a cornerstone of the guidelines.
Chair: Thanks to the audience and to the 18 speakers, says over 40 applied to speak.
150 different people submitted testimony, including the speakers, and all of this will be taken into consideration in the process of consideration of the Guidelines. The panel will come up with a report which will be provided to the IDSA, which hopefully occur before the end of the year.
Whenever I have had labwork done, it is the lab that interprets the results, highlighting anything that falls outside the "normal" range.
The doctor just glances at the lab results, looking for the word "abnormal."
Summary thoughts from Dr. B:
We all saw and heard these presentations- what I would like to mention is the absolutely tremendous debt of gratitude we all owe to Drs. Cameron, Liegner, Phillips, Fallon, and Stricker; to Allison DeLong and Betty Maloney, definitely to Tina Garcia, and especially to Lorraine Johnson. Most of these brave and super smart people spent countless hours with 3-hour long conference calls, sometimes twice a week, plus an un-reimbursed trip to New York City for final tweaking of the presentations. I did partake in much of this (but IDSA did not accept me as a speaker), and I have to say that I have been and continue to be impressed with this group.
We as patients, doctors, other health care workers, and caregiver/loved ones together, all salute and thank this very wonderful group. Regardless of the outcome, your contributions will never be forgotten.
I was not surprised to see that Drs. Fallon, Luft and Donta oppose the conclusions of the guidelines, but I honestly was pleasantly surprised to hear the words of Dr. Volkman who so clearly disagreed with these guidelines.
On the balance, the presentations and the science clearly favored a revision for the better of these 2006 guidelines. However, it is unclear to me the role bias may play, especially since the panel members are all mainstream and IDSA professionals who were hand picked by the IDSA itself. Fox guarding the henhouse!
Please stay tuned to our e-groups to get the latest updates as they are released.
Thank you all for being here, and I especially thank you all for your courage, strength and perseverance.
As I have said many times, we will not go away until medical truth and justice prevail.
Congratulations to all!
Dr. B…………………!
Yes thank you indomitable
how many have watched the IDSA guidline review? How many on Calda?
Public appreciation of Dorothy who has been here all day gallantly providing updates. I gotta go folks, but will tune in again tonight.
AAARGH!!! Of course it cut off just as Dr. Stricker was being asked to respond again!!! But thanks for making this possible, even though it was very frustrating to listen. One side says one thing, the other another – to whom are they going to listen?
Ditto on Dr. B appreciative comments to all of you who are working so hard to help so many victims of Lyme disease.
Dr. B. thank you for all you do! It would have been great to hear you speak.
In all due respect Dr. Wormser, if you truly added the 2006 definition for “Post Lyme Disease Syndrome†for the purpose of future studies (as you have testified today), could someone please hit me over the head with the iron skillet b/c for the life of me, I can find no evidence of this being initiated in the midst of the rhetoric. And can we count how many post treatment labels the ID panel has initiated to avoid the terms ‘persistent’ and ‘chronic’? Its so very sad. Like a train being diverted to another track, all the cars following but no one having a clue the destination.
Wormser stated that ‘Late Lyme disease’ is “extremely rare’. How embarrassing for him.
Okay, for the record, “the ID guidelines are voluntary.†So says Dr. Wormser and we all heard it, including Dr. Shapiro who has testified as the expert witness on Medical Review boards that have proactively hunted down and condescended upon some of our Lyme specialists.
Did Barbara Johnson just publicly admit that the Elisa is insensitive?? So much smoke coming from the stack. So many variables. And unlike what she just tried to justify in the two tiered testing it is not ‘beside the point’! Patients are not well-served if you do not aide in the movement of R&D for that Gold Standard test and acknowledge science. Per Dr. Johnson, “Science and evidence will drive the CDC’s decision to ‘re-visit’†their own guidelines. Okay, Dr. Johnson, does today’s evidence count? What about the tests that Dr.Liegner mentioned that were used and have fallen away. Before discarding this so quickly based on only one phone conversation with only one scientist, does it not merit further consideration given the amazing results he was able to prove?
What a day. Dr. Baker, in closing remarks and speaking for the IDSA panel, stated that the next steps include finishing full literature reviews and coming up w/a report to present to IDSA. She said they hope to complete before the end of the year.
Although a couple of the presenters did manage to needle my generally hopeful ‘attitude’, I am still in awe of the fact that today is another first in the field of medicine. Unprecedented. History has been made and we had front row seats. We heard the words and know the truth. Now it is up to the conscience and motive of man to act on it appropriately with accountability and on behalf of the patient.
We can hope.
I unfortunately missed most of the speaking, but I am wondering if anyone knows if/when the talks will be put up for review — will the videos be available?
Also, I just read the opening remarks (posted on the IDSA website here: )
I hadn't realized this before now, but the panel that was listening to the speakers doesn't actually rewrite the guidelines. Here's the key quote: "After the hearing, the panel will … recommend one of the following: no change in the guidelines is required, revision to certain sections, or a complete re-write of the 2006 IDSA guidelines. Should our review panel recommend a change, then IDSA will convene a separate panel to carry out that task."
In other words, all this effort is to convince a panel that the guidelines need to be changed. Then we have to start from *scratch* with the next panel/hope that they are as open minded if we succeed in changing the minds of this panel. How frustrating!
Dear Dr. B.
I just read your commentary.
What a privilege to sit in this room with you. TY so very much for serving this community as a leader by example and for blazing so many trails so that when our day arrived, there were some answers in place to guide Bear and I in knowing how to help Heth!
You have given this family equipping tools to share with so many physicians that we have been privileged to meet in the educational aspect of our mission field now.
I pray that you are blessed far beyond what we could ever know to ask for! We are very, very blessed to have had the honor of hearing each one speak. Their hearts are so in the right place!
Blessings, ~d
I found testimony by Dr. Stricker, Ms. Johnson, Dr. Fallon, and Dr. Phillips very compelling in favor of changing the guidelines to allow clinical judgment to be paramount in determining diagnosis and treatment of late/chronic Lyme disease in light of the difficulties with sensitivity in the available tests as well as presence of individual patient considerations and/or co-infections. The literature to date does not support continued dependence on the 2006 IDSA guidelines in the current form, in my opinion. Much more research is necessary at this time. Although the guidelines are supposed to be voluntary, in most states there appears to be slavish adherence to them too often because of pressure from economic interests, in my opinion.
My son, who initially presented with EM was denied any treatment at all. He has now been ill for 14 years, is disabled, has no income and no insurance at this time and no readilly available access to appropriate treatment. Reliance on the current IDSA guidelines makes possibility of treatment for him to be almost nonexistent at this time.
I consider the current situation in this nation with respect treatment for to Lyme disease treatment to be terribly inadequate, and this situation should not be allowed to continue.
I appreciated the hearings and the diversity of perspectives presented. I wish to thanks all those who made the hearings possible.
Dr. B, you should have been there. And thanks to those who worked so hard… I thought the best part of the day (I watched about 50%) was actually seeing/hearing all these major players in one place. However I felt the proceeding was weighted towards those who defend IDSA and the general tenor of the whole hearing was to reinforce people in beliefs they already held. I am not optimistic that this will lead to real change. Yes, we can hope. We've been hoping for many years and we can't give up now…
Wow it was a long day. Great to have seen it on the web.
I have been trying to find a list of the members of the Guidelines Review Panel. From the webcast I saw the following names: Carol Baker, MD, the Chair, Paul Lantos, MD; Gerald Medoff, MD; William Charini, MD; John Sanders, MD;Jeffrey Parsonell?, MD and Manuel Moro, MD. Who did I miss?
I am so angry with Weinstein, Wormser, Steere as they still say NOTHING but deny us a life. What IS "Post-Lyme Syndrome"? After all that I still don't get a clear consensus from the IDSA "gangsters". They don't seem to agree on what "post-Lyme syndrome" is. There certainly are multitudes of us who must have "post-Lyme syndrome" as they say we don't have chronic Lyme. I was proud of how well the ILADS folks and Tina Garcia did, but I still have such anger towards the IDSA gangsters. Oh, yeah, that must be because I have a mental illness, not chronic Lyme.
to all posting here and will still add more to the replies,
please think about us severely neruo lyme patients and have shorter paragraphs and DOUBLE SPACE between each paragraph so we may comprehend and read your comments, which have been outstanding.
i have to scroll on by those super long ones with no double spacing and NOT short.
i've had chronic lyme 40 yrs. this xmas; 34.5 yrs. misdiagnosed by 40-50 drs, and am very SEVERE neuro lyme.
THANKS FOR YOUR CONSIDERATION and understanding to all reading this.
great notes and especially ALL THE DETAILED ONES you all took.
a real LABOR OF LOVE; for which we are most grateful for your time, energy, and BRAIN power 🙂 hugs/kisses
dorothy,
THANK YOU for typing up all these notes today for us all to learn from. excellent as usual 🙂 hugs/kisses
lorraine & calda,
thank you ALL for creating this summary
this summary and helping us get to hear this without giving our names, emails, and our privacy invaded!
doug orrel,
you mentioned about getting willy borgdorfer to speak at congress at what he DID NOT SAY when interviewed with UNDER OUR SKIN director andy wilson.
fyi, 1 of our lymenet.org members called willy several months ago and talked 45 minutes to him. he did ask him that question.
basicly it was he DID SAY everything to andy.
this member was going to type up notes of their joint conversation and called willy back to get permission.
willy asked that he send him the notes FIRST before they are put online for all to read.
this member then got very sick on his lyme treatment, and we haven't heard if he got them typed, and sent to willy for his approval. we will learn more in the future about their convverston.
dr. burrascano,
thanks for your comments as the day progressed and your long post afterwards.
i missed ALL afternoon; when they took their lunch hour, i went to sleep since i didn't get to bed until 3 am and on here 7am to listen & then pc problems.
slept 2 hrs. and woke up to dr. phillips slide presentations galore!! WOW can he read fast & knew his stuff. i was really impressed, and what a nice looking young l,lmd we have!
when i woke up i heard 5-10 minutes only and then 10 min. break.
took hubby to neurologist for his parkinson's appt. got there they had NO RECORDS saying an appt. was made so we waited 1 hr. for them to work us in!
got home & it had just endedl; so i really appreciate reading all your notes!!
so when it's ready; i'll have to listen to the afternoon session only.
dr. volkmann …OUTSTANDING, WELL DONE, and read somewhere you are very SICK, and yet you were on TOP OF YOUR GAME presenting good things to all w/those great slides.
dr. volkmann, we hope you recover soon from your own illness, and can enjoy your GOLDEN years.
glad you were on our ILADS chronic lyme literate md side!! YOU WERE MOST IMPRESSIVE.
above someone stated this panel was only to decide if anythign needed to be done with 06 guidelines; i was under the impression if they decided yes, THEY would be the ones doing the work!!
govt. at its best; more red tape and trees cut down!! HOG WASH.
BettyG
Iowa lyme activist
Dr B, thank you for your words and input!
I swear before GOD that if I had a child that had Chronic Lyme Disease.I would go to the end of the earth to get him/her long term antibiotics.These people that dont believe in their benefits have never experienced what those of us that have.I am thankful my doctor has listened to me and said he wont cut me off until I feel I am better through trial and error.Without them I am useless and fall into a pit of pain,depression and hopelessness.He was skeptical at first but he believes me and knows Im not crazy and is standing beside me.Shame on any doctor that would deny treatment to someone who is suffering with this debilitating disease.With antibiotics you can manage somewhat of a normal existence and lead somewhat of a productive life.I would not want to live with the pain and misery that I had prior to getting on Doxycycline.I have a high tolerance for pain but this was relentless and agonizing as any I have ever experienced.I remember watching a child in Europe on Youtube as her mother video'd her pain and it broke my heart.It doesnt take a mental heavyweight to realize what this bacteria is capable of when watched under a microscope.Children that dont understand whats going on and cant explore their own care as I have are in my prayers.Willy Burgdorfer neeeds to step up and tell all he knows about this disease and the NIH needs to release all they know.I believe their is more knowledge on this bacteria but they are not releasing for whatever reason.
I'd hoped to watch the entire day, but today turned out to be a sick day, so couldn't do it. Left it playing on the computer so my husband could record it for us for a better day. The only part I heard was when I happened to walk through the room while Dr. Shapiro was talking. His comments on the uselessness of ABx treatment just flattened me into tears. Wish I had caught something more hopeful. I look forward to reading everyone's comments later, but my eyes give me too much trouble most of the time.
Thanks BettyG for the updated info on Willy B. and I look forward to hearing more.It sure seemed as though he was holding out info based on that interview.I would certainly hope someone of his stature would withhold any valuable info.
I am sorry for the long paragraphs but I seem to get into a mode while typing
I am a pecker on the keyboard and it takes me forever to post and I know what you mean about getting lost in paragraphs
Wanted to thank all the people that are working so hard on behalf of lyme suffer's like myself that are too sick and can't speak for themselves.
i have waited all my life for this moment, thinking the members of the CDC who wrote the guidelies will finally be held resposible and the truth will come out.
What little i can gather is the members of the panel where hand chosen by the ISDA. And it take 75% vote to make any real changes to the guidelines…
Isn't this a conflict of interests ?
If they where hand selected , then why would they now collectively admit everything they have been saying the last 20-25 years is untrue?
There where some awesome speakers today with lots of compelling scientific research & facts. But what how does this help? If the panalist's where had picked by the IDSA? And need a 75% yes vote to change anything.
Hoping i am so wrong about all of this. Any thoughts?
"wanted to thank all the people that are working so hard on behalf of lyme suffer's like myself that are too sick and can't speak for themselves.
i have waited all my life for this moment, thinking the members of the CDC who wrote the guidelines will finally be held responsible for their self searving interest's and criminal acts for the last 20-25 years that have left so many of us sick and dying .
And was also hopeful that once the facts where presented finally the turth would be told maybe just once and a real change might take place.
What little i can gather is the panal members from today's hearings where hand chosen by the IDSA. And it takes 75% of their vote to make any real changes to the guidelines…
If they where hand selected by the very people who wrote the lyme guidelines to begin with, isn't this a conflict of interests ?
There where some awesome speakers today with lots of compelling scientific research, facts and truths about Lyme Disease. But what how does this help? If the panalist's where hand picked by the IDSA and need a 75% yes vote to change anything .
And why would they now collectively admit everything they have been saying the last 20-25 years is untrue & vote to change them now?
Hoping i am so wrong about all of this. Any thoughts? "
sorry for the repost …don't know how to delete the first one
It is a convenient and easy scapegoat to blame chronic lyme/post-lyme syndrome on a second tick bite or psychiatric illness such as Somatic Disorder. To say that all these people have had a somatic preoccupation since childhood or early adulthood is unbelievably pompous. It's too bad that the panelists are likely to tolerate and/or accept such foolish notions. I hope I'm wrong…
So much said today – my head is still spinning – what a day –
First of all – a huge thank you to all those who testified in our favor – heros for us all –
Am wondering why very little was said about coinfections, even to include discussion of them in the guidelines. They are quite common in Lyme patients and part of treatment decisions.
After hearing Sood deny Lyme recognition in children, it left me wondering whether there is any special outreach by our side to educate pediatricians.
Odd to hear Shapiro, or anyone, call fibro an unknown disorder, when mine so clearly is Lyme –
starting after a known tick bite and responding instantly to clindamycin abx – fibro pain went to zero in a week's time after doing 150mg 4x/day –
and yes, I was my own doctor initially, as I am highly allergic to abx and knew I could take clinda which was in my drawer. It's not even listed as a Lyme-treating drug, yet is the only abx that works for me.
If I stop it, fibro and joint swelling starts immediately. So much for the other side's nonclinical opinion about no more drugs needed.
As sad as Shapiro's comments were about psych/somatization, those were exactly the kind of comments I heard throughout my years of undiagnosed Lyme.
It felt like being in the twilight zone. At one point, I found out one famous pain clinic had made a false psych report on me, which followed me around, such that I never understood doctors' comments to me.
When I found out what had happened, I confronted the university and asked for those records to be corrected.
I say we have to stand up for our medical rights, since they have tried so hard to deprive us of them. I don't stand for any nonsense in a doctor's office anymore. No more respect for doctors unless they have earned it.
And so many of our finest were here today! I have some hope that things will start to change.
I am so very grateful for all the LLMDS out there fighting for us. Thank you!
The ILADS presenters and ALL people on our side did a great job. They really covered the whole field without too much overlapping. They worked as a team and it was not so much obvious as seamless. Everyone was well prepared. It was impressive and I think the panel members recognized it. Lorraine said several expressed their appreciation for the book ILADS submitted.
The other side – Phil Baker, Steere, Shapiro etc barely even recognized that there was any opposition. It was pretty amazing. While our side referenced their work and statements and directly challenged them, they seemed just to plow ahead like draft horses with blinders on. It reminded me of the Kennedy hearings where Steere and Burrascano spoke, and finally one of the legislators said, "It sounds like you two don't agree." Duh! Steere did acknowledge that someone – I think it might have been Steve – had cited his work, and he said he had moved beyond that interpretation. Otherwise they might have been ships passing each other in the fog. They could keep stating the same tired arguments without any comprehension that the earth was shifting beneath their feet.
It didn't bother me too much to hear the other side saying what they always say. I think they came across as condescending and arrogant and – well – ivory tower. They are not in touch with what is happening in the field.
I am hopeful that the panel will actually seriously consider recommending certain parts of the guidelines be changed. Ken Liegner and others made really eloquent pleas for clinical discretion, patient choice, humane considerations. Although the other side quoted the NIH studies as supporting NOT treating longterm, when they asked Brian Fallon directly, would he recommend treating, he said yes, He may even have said, "Definitely." At least he sounded definite. That will stick. If they recommend no changes or only minor changes, which I think is unlikely given the evidence, the IDSA will not look good. They will become irrelevant and undermine their own credibility.
We were up at 5, tuned in – by 9am I had exceeded my fair access policy (my satellite ISP), lost my feed and so had to drive down to town to use my daughter's dsl. Dorothy heroically provided updates all day, and it sure was challenging to post anything while listening. Let's the discussion on our blog, https://www.lymedisease.org, over the next few days, and posting those presentations we have permission to post (our side). The rest will be in the IDSA website for the next 6 months or year.
Thanks to all the people who did such an awesome job under great pressure today. Let's all hope for a positive outcome of this process.
Dr. Phillips…you are the man, my friend. I just read your testimony, as I could not watch it(had to work). Without you, well I don't know what might have happened to me, but I shudder to think of it.
All the rest of our bright and brave ILADS doctors…you rock.
the ILADS speakers did an amazing job today, elequent and precise and i deeply appreciate all their work.
i desperately want to believe that some real change will occur but still do not understand how the panel members could have been hand picked by the ISDA ?
Is this this fact true? If so isn't this the very definition of "Conflict of interest?"…
it all seems so ironic.
Anyone wish to comment?
Yes IDSA is at fault for so many of us who are suffering and dying because we can't afford treatment. There is so much proof regarding long term lyme disease and they choose to ignore it. I believe we should all join together and let the IDSA know that they are at fault for letting people die when they could be easily treated and well. Obviously long term antibiotics work and we have proof of all the patients who could afford the treatment without insurance.
I have been on long term antibiotics consistently for 9 years now and felt great – no symptoms whatsoever! When I went off them, the severe LD headaches and eye problems returned within a very short period of time. Like Doug Orrell and others, I am looking for a cure, a combination of antibiotics, whether oral or IV together, that leaves you without any symptoms for a long period of time – does anyone have any recommendations?
Our LLMD's were well prepared for battle today. Something I try to keep in mind is that the truth will always come out no matter what it is or how long it takes. God is bigger than this, My simle prayer is God will shine his light on this situation and take care of thde weak and the sick. He will. It's so hard to live this everyday but there is an anchor. I think the doctors on our side made very good arguments and a good case. Thank you so much for everyone who was there and the people that work for us everyday. My doctor in Ca. and his PA. We love you very much.
Thank you ILADS for taking on the fight for every lyme advocacy group and their set of patients and doctors they advocate for. I believe Lyme is one of the few illnessess where the non profit organizations pay more out of their own pockets to support patients, because there is not enough awareness to raise funds, and in fact there is negative response to many big corporations who rely on IDSA to approve medical donations from their companies.
For every bed ridden,pain ridden, neurologically or cognitively affected patien we can help, that is one more family that wont suffer the losses that so many of us already have suffered.
Thank you for your effort and time on behalf of every (over 800 CDC positive) patients in Oregon.
Please, enough of the politics. There are many of us who are suffering and need treatment. PLEASE!!!
Thanks to CALDA for this blog. Thanks for showing us up close & personal the politics that prolong our suffering and inability to find treatment.
I just watched a news conf. about Ct. Senator Chris Dodd having prostrate cancer.
During this he stated that he has good health coverage and they caught it early and he is going to be fine.I hope he will be but it seems unfair to me that he has good coverage,doctors and medicine that has been paid for by us the american taxpayers so he can get the help he needs.
While thousands of us struggle with a disease that was recognized in the state he represents and most cant even get the antibiotics prescribed just so they may have some quality of life.
He said he is meeting with Kathleen Sebelius the director of health and human services next week.I think the Lyme community needs to flood the offices of both of these politicians as well as others and scream for help until they hear us.
I appreciate all those who testified yesterday on our behalf but I am afraid that their efforts will fail based on the Shapiros and Worms of Steal.
This disease was discovered in Lyme Ct. and I feel it may be an opportune time due to Dodds own health scare and his bleak political future.Ticks are everywhere and this disease does not get the attention it deserves due to poor test results.
I dont have health ins. and am fortunate that my doctor gives me the medications and they are inexpensive.I feel for those who cant even get a cheap antibiotic so they may stop the pain.
Its time we demand that doctors be obligated to write prescriptions for people who suffer from Chronic Lyme.
I think Willy Burgdorfer should testify before Congress and explain how difficult this disease is to erradicate once it gets a foothold throughout our body.The research must get more atten tion and new drugs need to be developed along with better testing.
We must use every politician that will listen to get this accomplished.I promise you if Senator Dodd realized it was late stage Lyme he was dealing with Kathleen Sebelius would get an earfull next week.
Lets unite and demand the right at least to medications that exist to manage this hideous bacteria.We are not a third world country for Gods sake and if we can give health care to millions of illegal aliens the least they can do is allow us the right to medications we will gladly pay for.
There are to many of us who are benefitting from cheap antibiotics for them to be denied to those who need them.I know there are riks but in my opinion the benefits far outweigh the risks.
Like many others, my quality of life sky rockets when I am on antibiotics to control the Lyme complex infection I seem to be saddled with. Every single time I have attempted to get off of the antibiotics, the unbearable headaches, stiff neck, fatigue, weight loss, low grade fever, etc.. come roaring right back. This has gone on since 2002 for me.
It enrages me that we are not given the choice to stay on medications that bring us back from the dead, EVEN WHEN they are not always a cure for everyone. It is akin to taking a life saving elixir away from the dying just because they will continue to need the elixir. It's akin to taking AIDS patients off of anti-virals because they are not a "cure"
I feel incredibly lucky to have a dr. who trusts me and is willing to give me the life saving elixir while knowing that it may not be a cure in the long run.
It's ludicrous that the true state of affairs is not acknowledged by those who know better, and beyond that, that they spend their time and energy going after the doctors with the courage to prescribe the meds. that keep their patients going.
This is all old news of course! But it helps to vent within a community that gets it.
I am so proud of this community and those who represented us in these hearings. What a day.
What struck me most profoundly after watching/reading about the hearings yesterday was the fact that RESEARCH IS THE ONLY THING THAT REALLY MATTERS.
I have a free Lyme Resource CD of information I have collected in the last year and a half helping my wife battle Chronic Lyme. Email me to find out how to get a postpaid copy!
Scott Adams
http://www.msadams.com
msadams@msadams.com