Please could someone post who was there with just a brief synopsis?
Thanks.....wish I could have been there!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Heard that about 130 people attended to support him. He had a high temp and insisted on going but was not able to testify. Coming down with the flu or something apparently. Rescheduled his testimony to another date. Dr. Fallon explained his research. That is all I know. Hoping someone who went will come along with the scoop.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
That is basically how it went Lou. The panel of "judges" seem to be very pleased when questions were asked to put Fallon or Jones on the spot. Not really sure what the actual role of the panel is. Are they supposed to be neutral or are they supposed to be interrogating like the prosecutor? I know they are supposed to ask questions but the questions always did seem slanted against the case, however maybe that's the way it is supposed to be?
The courtoom was basically filled so that was good and Dr. Fallon did a very good job answering the questions and presenting his info.
Posts: 1176 | Registered: Oct 2002
| IP: Logged |
posted
Of course, I got there late. But the large room was packed--lots of kids, too.
Dr. F was in the hot seat reviewing slides of neuropsych. effects of lyme. He referenced many studies...one of which was done by steere. It showed children DID have symptoms long after treatment...
Steeres interpretation of the data is that the kids didn't attribute these symptoms to lyme..(since it was 4 yrs later)...
Dr. F says thats not the way to interpret data-- his interpretation ws that it was Lyme since all the symptoms are lyme-like (headache, psych issues, pain, arthralgias, headaches, myalgias etc...)
Medical board sat at the edge of their seats as he went through study after study of neuropsych illness in children.
Dr. F reviewed his work on hypochondria. Says major diffs between hypochondriacs and lyme pts...
He asks pts these questions: "If a disease is brought to your attn do you think you have it?"
Hypochondria says...YES Lyme patients says...NO
"Do you think others are not taking your illness serious enough?"
Hypochondriac says ...No (medical commty take my symptoms serious) LD patient says...Yes (medical commty doesn't take my symptoms seriously)
He says that Lyme pts only think about lyme and try to get treatment for lyme...hypochondrics are all over the place.
Later the medical board members asked... "Where does the hypocondriosis stop and munchousins (sp) begin?"
Dr. F answered: Munch gain pleasure from attention, Hypochondriacs don't like being the focus of attn and tend to be afraid of docs...
He has seen one munch pt who ate a bunch of bannanas to affect potassium levels..
Q: "What about munch by proxy (mother). .. Dr. F says that this is very very very difficult to determine.
He showed slides for his new NIH study on chronic lyme. Of the 3000 pts interviewed for the study only 37 made it into the criteria. (CDC pos test, prev. 3wks IV abx, spect, pet, cfs, mri...memory probs, and current postitive IgG)
They were given 10 weeks either IV roecphin or placebo
off abx 14 weeks repeat testing... week 12-24 ???% relapsed. got mor drug and showed sustaind improvement over time.
Pts with the greatest pain levels had the greatest improvements.
At week 12 significantly greater improvement vs. placebo. Summary: Retreatment can be helpful...Cognitive benefits were predictable with abx!
( Sorry I missed all the details here but he was going very fast through his slides...I can't wait to get my hands on this study)
Also, he said he learned that of 1000 pts interviewed, there was an average of 1.2 years delay in diagnosis, 615 were CDC pos, 542 non CDC pos.
Of the CDC group they had recieved 5.5 months IV and 13.8 months oral therapies to date.
The non CDC had 3.67 months IV and ???oral.
Average treatment lengthe was 2.3 months IV and 7.7 months orals.
Pain levels in most pts similar to post surgical patients.
Medical board loved this data...one member said it was extremely interesting and wishes there were 3000 pts in the study and that it was available years ago.
Board Asked....how is this data helpful diagnosing a child with no tick bite and nonendemic area????
"Would you allow this child into your study?"
Doc F says that no but when making the diagnosis of lyme symptoms are the first thing look at --multisystem symptoms...
Board asked "Would you prescribe abx over the phone to a pt you never examined?"
Dr. F says no...
"Did you read the charges against dr. J" "Yes"
"Do you agree that dr. j didn't entertain a differential diagnosis for the children?
Dr. F says that he himself doesn't write down everything he is thinking in the charts but dr. J did so many blood tests for viral toxoplasma, ANA etc...that you can tell he was thinking about differential diagnosis."
So that is what I was able to catch...After we broke for lunch, dr. J was supposed to be cross examined but he got ill and couldn't continue (he was sweating and looked terrible)...
So they dismissed...
Any one else there please add or edit....I think Dr. F did a fine job at neutrilizing shapiro...
One more date I think in December...
Blessings today. Kim
-------------------- We are spiritual beings on a human journey...
posted
Thanks for the report. Did Dr. H testify also?
No, the panel is supposed to be impartial. But if they actually were, they would not have been selected for this job. Supposedly the panel makes recommendations to the state board and they make the actual decision. But since this is a kangaroo court from day 1, impartiality is about the last thing we can expect. Shining the light of day on such proceedings is a good way to bring the frighteners to this group. I am sure the proceedings will be recorded and a transcript prepared. If they think this action cannot be questioned, and evidence of bias produced, based on the proceedings, they are wrong.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
The hearing was well-attended and the gallery was full, primarily with folks from New England but some from much farther.
Pat Smith was there, handing out info about the Blumenthal/IDSA class action which certainly served to boost the mood. Reporter(s) were also in attendance.
Dr. Fallon gave direct testimony which was followed by cross exam and redirect.
After lunch, Dr. Jones was scheduled to be on the stand for additional cross but he was not feeling well and the hearing was adjourned at that time.
I spoke w/his daughter who said he was running a fever and of course, typical for Dr. J, he was stoic and being a hero and she had to talk him into going home to rest.
I didn't take notes, so I may have skewed some of the following, but here is some of what I remember:
Dr. Fallon gave direct testimony for about an hour (accompanied by a slide presentation) on the neurological aspects of Lyme for both adults and children. He was soft spoken, calm and erudite.
He based his conclusions on his own expertise as well as that of about a dozen peer-reviewed articles, many of which are well known w/in the LL community.
At times, he emphasized the fact that children with late stage Lyme frequently only present with non-specific encephalopathy without concurrent "objective" physical symptoms.
He mentioned cases in which Lyme was undiagnosed or undertreated which resulted in death or blindness for the child. He emphasized that Lyme had the potential to be a very serious illness.
When asked if he, as a practitioner, would be comfortable making a diagnosis or prescribing medication without having first seen a patient he replied that he would not.
He did, however, draw attention to the fact that his work was that of a psychiatrist, not infectious disease specialist.
He was asked to compare the limitations and exclusionary criteria used to select subjects for Lyme studies against the criteria a clinician would use to diagnose a patient.
He indicated the criteria used for his study were deliberately extremely narrow so that results were unimpeachable by any standard and that if used by a clinician for diagnosis, would exclude MANY patients infected with Lyme.
He also mentioned that some of the studies required the patient to have certain symptoms(like arthritis)which automatically excluded significant numbers of lyme patients from participating. He said limitations were relevant when considering a study's conclusions.
He said that the CDC reporting criteria are also extremely narrow and exclude many patients who in fact do have Lyme and he would not would not use it as the basis for making a diagnosis.
He was asked a number of questions regarding what his clinical judgement would be if presented with a patient whom he had not met and was alleging a number of non-specific, subjective symptoms.
He responded that he would seek additional data in the form of history taking and testing which according to his review of Dr. Jones notes, was done.
He also drew attention to the fact that it was clear from the specific labs that Dr. J ordered, differential diagnoses were being considered since those labs were unrelated to Lyme but necessary to identify a number of illnesses that could have similar sequalea.
He was asked about his clinical expertise and research specialty concerning hypochondiasis and how he thought that might relate to the case at hand.
He said that in a comparative study of people with hypochondriasis and those w/Lyme:
When the sample patients were surveyed regarding whether or not they felt were recieving adequate attention to their medical conditions:
Only 17% of hypochondriacs felt they were not receiving adequate medical attention as opposed to 72% of Lyme patients. Unprompted, he added that the Lyme patients perceptions were reasonable.
When asked how hypochondriasis and Lyme and Munchausen's were related, he said that in fact they were not.
He said his experience w/hypochondriacs showed that their problem was obsessional in nature and that there was an aversion to medical intervention in general.
He said hypochondriacs have a fear of being afflicted w/many random diseases whereas Lyme patients do not. Instead, they are driven to find relief from specific multisystemic symptoms they experience as a result of Lyme infection.
He was bemused when the hearing board asked about "Munchausens" and he informed them that it is an extraordinarily rare illness where an individual purposely contaminates themselves.
He said he had encountered only one case of "Munchausens" in his entire career; that of a man who binged on bananas in order to deliberately drive up his potassium levels.
He went on to say he assumed the board actually meant "Munchausens by Proxy", an extremely rare pathology in which an individual deliberately causes damage to another to create an illness for the purpose of gaining attention for oneself.
He said that in his practice he would be extremely reluctant to draw that conclusion since in most cases where it has been alleged, there is in fact an undiagnosed illness.
He asked about the impact stress might have on neuropsychological tests and he responded that of course it could but the degree to which it occurred cannot be quantified and is individual.
He was asked if he thought divorce was a major stressor for children and I think he said "obviously".
He also said that allegations being made regarding the fitness/reliabilty of the other spouse during a custody battle were likely.
To the amusement of the gallery, the cross examining attorney wryly noted that that was why they called it "contested".
Relatively much was made of the definition of the word "endemic" and he said that the one used by the CDC was fine.
When asked how likely he would be to make a Lyme diagnosis for a person living in a non-endemic area (like Nevada), presenting with non-specific symptoms, as opposed to someone living in a highly endemic area, he replied less likely.
He added that he would need to take the entire clinical picture into account, serology, and the possibility of travel to endemic areas, like California.
He was asked to review the mothers medical history and to draw a conclusion about the reliability of her reporting of symptoms (to Dr. J).
He said that he noted that she had had a number of medical issues to deal with during her life, lupus being one of them. He was unwilling to make a judgement re: reliability based on her medical history.
That's about the gist of what I recall for now.
andie
Posts: 278 | From weston,ct.usa | Registered: Aug 2004
| IP: Logged |
posted
Great report, andie. Did Dr. H not testify then?
It sounds like they are trying to use the witnesses to hang Dr. Jones. They are not looking to see whether he helped this child.
I was glad to see that his daughter was there with him.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I was there from the UK. But, I have nothing to add, it has all been really well explained already.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
bettyg
Unregistered
posted
Thank you all for attending and giving us your perspectives of yesterday's events; great job reporting! Sorry to read Dr. J got sick; would have been nice to FINALLY have this all over with!
Dr. J; thoughts/prayers/hugs/kisses headed your way!
IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hurray for the good turn-out.. and thank to all who went.. and to you Don't Like Liver! It was TOO COOL to have you there.. all the way from across the big blue ocean!
The reports were wonderful! Good work. No.. actually..
Does Dr. J have to testify later, and if so, when?
Will people be given a heads up on continuing to attend the trial and supporting dear Dr. J?
I was so sorry to hear that he is ill. No wonder, all the stress he has been under.
Will people have to make additional plans to attend the continuance of the trial? Just wondering.
Thanks to all who reported on the case so far!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Kangaroo City. If this is how the so-called "board" regards lyme patients, as hypochondriacs and munchausen cases, it's history.
Dr. J is a brilliant, compassionate man who's devoted his life to helping ill children. The board is considering them as nut cases.
Same as Jemsek, different day. If this was a case about a doctor making a mistake he'd get the customary slap on the wrist and sent on his way. It isn't though. It's ALL about using long-term abx for lyme.
Believe me, there may be one or two board members who took a passing interest in Fallon's testimony but the vast majority had their minds made up before they hit the courtroom. Same thing happened with Jemsek.
The children's mother is a nurse for Godsakes. Her and her husband are entangled in a bitter custody battle. The rx was for a very short time and may actually have been prescribed by another doctor.
There isn't a reason in the world this thing should be dragging on for months, especially with a 77 year old man. Lyme treatment contrary to IDSA guidelines is on trial.
When Fallon said he wouldn't prescribe abx without seeing the patient it was over. Just like when Dr. Phillips said he used IV abx rarely compared to Dr. Jemsek was a nail in the coffin.
Someone needs to bring a review board hearing on Shapiro's door or Steere's. That's how you end this crap. Good Lord, how many people has Shapiro condemned to a lifetime of misery through his incompetence, bring suit damnit ! Flood the review board with calls !
This passivity in the lyme community is going to end up getting everyone either permanently disabled or dead. Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Thank you everyone for the update on this case and what happened at the last hearing.
Sadly, I live just two states away, had been undiagnosed for five years and now CLUE any of this was going on.
Once diagnosed, I was reading everything I could on this topic in a crash course. It's hard to believe this could be happening in our country.
Someone said that they will resume in December. Any idea when in Dec and will the Igenex doctor be testifying as well or is that tossed out?
Any future information would be so much appreciated. I don't have children with lyme, but I do have children and thank God every day it was me and not them.
So I do relate. Again, thanks to those that were there and could give first hand reports.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
I would like to make my contribution to flooding the review board with calls.
Anyone have a phone number or better yet can we dig up e-mail, phone numbers of the individual hearing board members.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[confused]](graemlins/confused.gif)
![[kiss]](graemlins/kissing.gif)
![[group hug]](graemlins/grouphug.gif)
![[cussing]](graemlins/cussing.gif)
Printer-friendly view of this topic