Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Dear friends,
Please forgive my ``stream of consciousness'' ramblings...I have tried to organize my thoughts about the time there as best as I can that make some sort of sense to me. I have also tried not to repeat things that have already been posted, so this is not by any means a full account of what was said and done.
I arrived back home late last night after a very long day of traveling. My mind is still reeling with visions, words, and thoughts that I absorbed over the last six days...and I know that until I get it all out and down on paper, I will not be able to focus on anything else.
Tincup and I were in the parking lot at 6 am sharp on the morning of the first day. But as you are all aware of now, it was pouring rain. Later that day, I heard on the news that over 7.6'' were recorded- a record, and that there were flash flood warnings all over town. Main streets were closed off, and sadly, a boy drowned.
So, we stayed in the car until others began to gather at the front doors around 7 ish. For those who let me share your umbrellas- THANK YOU!
Do to the umbrella issue, though, the line wasn't very straight- and you know how we are anyway- a straight line seems an unattainable challenge. So, I happened to push my way in as the 15th to sign in. I found out later that 120 people had signed in that day...and I KNOW that there were many more that gave up and left without ever making it through the door.
Each person was wanded down and all bags were searched. We huddled wet and cold in the lobby until that was full to overflowing, and then chatted with anxious expectations for the day ahead until we heard the bad news that there were only enough chairs in the actual hearing for 11 others once all the witnesses and press were seated.
Being 15th, I was able to get into one of the overflow conference rooms with a chair...but...there were no monitors to let you know what was happening...AND...we were asked not to talk too loudly OR not to leave because the hearing was across the hall, so, I gave my seat away to someone else.
I thought that I would rather be out in the lobby where we could at least visit rather than sit in that room all day cold and wet with no news.
The next morning, I was up bright and early to try the whole process again, with the hope of being the first in line. Thank you Robi for picking me up at the crack of dawn! When we arrived at 6:15am, there were already three people in line! OK, so I could live with 4th place.
While in line though, I had a patient on the opposing side in front of me, and three more right behind me. Needless to say, the emotions were charged and I felt a very strong negative energy surrounding me.
As a side note...it is difficult to stay objective when you feel that you owe your doctor for saving your life. Having said that, I also knew that the ones behind me were experiencing the opposite reaction. THAT was their reality...the husband and father of two beautiful (yet very angry) young women had died, and they had every right to feel whatever they did.
I was overwhelmed with compassion for all that were there that day. And have tried to keep my point of view as objective as possible considering all sides and perspectives involved.
I am very grateful that I had the opportunity to attend the hearing for the second day. It went from about 9am to 9 something pm on Thurs (my watch has been stuck on 3:10 for over a week now). I think that by that time, everyone involved was exhausted, and wanted to go as long as necessary to get it over with.
I know that the board itself was tired, as I saw at least 4 board members nodding with sleep most of the day beginning at 10:30 am! It was, of course, infuriating to me! I wanted to stand up and shout ``I object!'' But did not want to get myself thrown out after coming so far to be there.
I was envisioning all of them sitting up there with IV poles and needing an infusion of caffeine!
Anyway...
It was a day full of suspense and intensity.
Drs. Fallon and Phillips were essential to the defense.
They both did an excellent job presenting facts and figures and rattling off names and dates and studies with the most impressive assurance. I am certain that all who attended got a good idea of how complex and difficult Lyme disease is to diagnose and treat based on their expert testimony.
I have to say here, that Dr. F was my hero for the day. His newest study had NOT been published yet, and therefore he asked that those in attendance to not disclose his information. The opposing council objected in that this was a public hearing and all that was said would be on public record.
Dr. F had to make a decision there and then whether to proceed... without hesitancy, he decided to continue. This is one the most unselfish acts I have ever witnessed. His presentation was well organized and showed without a doubt that long-term treatment for Lyme was essential. The cross examination however focused on the fact that Dr. F does NOT treat with antibiotics himself, and therefore could not be an expert in the treatment of antibiotic therapy for Lyme patients.
For those of you who do not understand this...Dr. F is a practicing Psychiatrist who does treat the neuro component of LD with psych meds. He works in conjunction with other doctors who treat patients with antibiotics...but does not prescribe antibiotics himself.
Now...his study did include antibiotic treatment, BUT that was for ``research'' purposes, and not ``treatment'' purposes. It is a dotted line at best.
When Dr. P was sworn in, the process moved back to the charges at hand, and there were 10 files on the desk before him. Each case was gone over one by one and three questions were asked of Dr. P on each case.
*Do you agree with the diagnosis of Lyme disease? *Why? *Do you agree with long-term treatment for this patient?
He agreed with Dr. J on his diagnosis and long term treatment for all 10 cases presented, sighting the clusters of symptoms consistent of Lyme, the overwhelmingly positive testing preformed consistent with Lyme, and the treatment necessary consistent with long-term treatment needed.
HOWEVER, and this is where things get complicated... on the cross examination, the opposing council asked IF the positive testing was what the CDC used as their standard for a positive diagnosis...ELISA...and of course, the answer had to be no.
There WAS much discussion on testing in general, and on the CDC ``surveillance'' criteria not being used as ``diagnostic'' criteria...
BUT- the standard of care in NC currently follows the CDC criteria. Therefore, Dr. J was NOT following the currently accepted standard of care for NC.
This, my friends, is where the problem lies. And if any of you want to focus your efforts on doing something- this is what needs to change.
The opposing council also focused on the long-term treatment given- specifically long-term IV. According to the standard of care in NC, 6 weeks max of long-term treatment was sufficient. And Dr. P admitted that IF he did not see any improvement in that amount of time with his patients on IV, he ``may'' have to determine that the diagnosis was incorrect.
Dr. P, although very impressive and well learned and the last president of ILADS, IS by admission, a very conservative doctor in his approach to treating. He does not treat extensively with IV unless he feels it is essential...so, the opposing council pointed out that Dr J's standard of treatment was exceeding what even Dr. P would have administered.
Of course, Dr. P went on to tell that each doctor treats to the best of his ability and expertise when he feels it is necessary and that he saw NO problem with the treatments that were administered for all 10 patients, HE just would not have done it that way personally.
The whole thing boiled down to weather Dr. J actually breeched the standard of professional misconduct by not following the accepted standard of care set forth by NC. According to the LAW, he did, and therefore HAD to be found guilty.
None of the patients, though highly positive by other tests, were by the ELISA...so, could not have been diagnosed with LD according to the current law that NC uses. (CDC guidelines)
The law must be changed.
The second point was IF he over treated. Again the CDC guides were used as the standard- and doc J exceeded them- again, guilty.
The third point was about informed consent. Because there are 2 standards of care, did doc J actually explain the difference to his patients and allow them to decide which one they wanted to use in their care? Well, sometimes... His paper work was inconsistent at best, and the ``2 standards of care'' clause wasn't included in his usual consent to treat forms that the patients signed...so, again, guilty.
Sooo...
Considering the board's criteria for judgment- Dr. J got the minimum punishment. According to their law, they HAD to do something. We will just have to wait and see what the stipulations will be for continuing care.
We are only human and mistakes were made in his practice- some with deadly consequences. Now, would they have died anyway? Maybe...we will never know. We do know that there have been many deaths associated with TBDs...but in THIS hearing, Dr. J's was the primary physician, therefore, by law, he WAS responsible. So, when all is said and done, I think the outcome was the best case possible- they could have given him much worse.
In a perfect world, none of this would have to take place. Everyone would understand the complexities involved, and not just understand them but accept that we are all learning as we go. Everyone would know that this is a serious disease vastly complicated by the associations of other diseases piled on top.
Everyone would ``get'' that by the time a patient seeks out a known Lyme specialist they have already been cycled through a minimum of 12 other doctors that let them go undiagnosed and untreated. Everyone would know that for the 5 cases presented that resulted in ill effects; there are thousands of other cases that resulted in a restoration of health. Everyone would understand that the Herx is a known reaction, and that antibiotics will make you feel worse before they make you feel better...and knowing the difference between a herx, and a bad reaction or a flare of symptoms is at best, an impossibility.
In a perfect world, there would be no ticks...but then we would have to get rid of the lice, and mosquitoes, and fleas, and biting flies, and sex, and motherhood as well...
So, while things aren't perfect...we must continue to educate. To tell our stories to anyone that will listen, and to continue to fight the good battles one by one until we finally end the war.
I urge each of you to do what time and energy allows helping with our cause, each voice is important and each act of kindness is needed. I can't begin to describe the solidarity I felt surrounding by so many people united in one cause. I thank each of you so sincerely for your efforts in being there, and to those that prayed and waited and were there in spirit...it WAS noticed and very much appreciated.
Much love and encouragement to all, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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I don't think the adoption of the CDC two step testing process or the Dressler criteria can be called a law, as in it is a law that these be used in NC. A law is something passed by the legislature. This is much more likely to be a determination by the state health dept. which does not pass laws. So, someone needs to check and see whether the state has passed such a law, which is unlikely.
That being the case, the health dept can also choose other standards.
Also, the CDC does not itself treat Lyme nor issue guidelines for treatment. And if it did, it would not be the law. They refer to the IDSA guidelines, which are not much good, as we know. But the IDSA is a private association, non-governmental, whose lyme guideline was written by a handful of people, including such non-treating persons as an entomologist (bug expert).
So, being found not to be adhering to such "standards" is not very convincing.
Has anyone at all mentioned the fact that lyme can be fatal? Sometimes even when treated.
Posts: 8430 | From Not available | Registered: Oct 2000
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you, Melanie!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Lou,
you and I both realize that the CDC standards were never intended to be used as the standard for diagnosing and treating...but, this IS what was referred to constantly during the hearings.
There was a NC law that was cited at the end of the trail by the opposing council that explained the definition for professional misconduct- THIS is the law that was used to determine whether Dr. J was guilty or not.
I wish I would have written it down, but did not. Perhaps someone can find it and post it here?
Anyway, according to that law, he HAD to be found guilty based on the accepted standard of care followed by NC physicians which was set forth by the opposing council the first day. This basically follows the CDC definitions.
I was not in attendence on the first day, so can not say what that consisted of, unfortunately.
I am sorry if my above post was confusing- goes with the territory right now.
posted
Thanks sweet melanie for such concise information and for being there (along with all of the rest of the people).
I admire your non bias spirit here and appreciate it.
I do just hope that more people don't lose their lives because more aggressive treatment is needed and doctors will be afraid to give it.
Please rest if you can!! NE
Posts: 799 | From home | Registered: Sep 2004
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bettyg
Unregistered
posted
Melanie, outstanding, detailed report! Thanks so much especially about your standing in line with those whose wife/Mom had died ... can't get any more real than that.
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
NE and Blue, you are both very welcome, I hope that this has added to a feeling of being there.
Now, against all odds, I HAVE to try and get some "work" work completed, so won;t be able to check in again till tonight.
Much love to you both, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
You are welcome Betty, sorry didn't see you there. I am sorry, I am a very slow typist and this has consumed my morning.
I would be happy to answer any questions later, but must go to work now.
Oh, and a HUGE thank you to those who organized the proceedings...job well done under such adverse conditions
There were many involved with this, too many to try to remember and list here...but thank you all.
Posts: 7052 | From Colorado | Registered: Mar 2003
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lymemomtooo
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Member # 5396
posted
Melanie, thanks for the report and for going..Actually thanks on so many levels..
Someday this will be resolved and all DRs will be safe to save our lives..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Wasn't criticizing your wording, melanie, and appreciate your putting us into the scene.
I was objecting to the idea that a state can enforce a questionable standard of care as if it had legal standing. Or standard of don't care, which is a better description of CDC and IDSA.
Posts: 8430 | From Not available | Registered: Oct 2000
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Michelle M
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Member # 7200
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Thanks for the detailed report, Melanie.
It's hard to believe any standard of care could actually still be based on the two-step testing, when it's widely known to be such crap.
I tested negative by ELISA but highly positive -- CDC positive -- with double and triple ***'s on borrelia-specific bands, on western blot.
Had my negative ELISA convinced me to stop searching, I am certain I would be dead now of brain swelling and encephalitis from neuroborreliosis + babesia WA1.
As angry as I am at mainstream doctors for being too arrogant to pick up some current lyme research and read it, the CDC is largely to blame for this joke.
They know that many people rely on them as the 'last word.' If they put up an announcement that the ELISA is unreliable and people should go straight to a western blot instead, they fear (correctly) that the number of lyme patients will immediately increase ten-fold.
Now that wouldn't do at all, would it?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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TerryK
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posted
Thank you for taking the time to write information about the hearing Melanie. My understanding is the same as Lou's so it is a bit confusing about what law they are using but it's obvious that something must change at the law making level if people are to be allowed to receive proper treatment for this devasting illness.
I whole heartedly agree with Michelle. The CDC is absolutely to blame!!! Look at their website regarding lyme disease. They clearly endorse the IDSA treatment standards, diagnostic standards and view and don't bother to inform the public that there are 2 standards. The only information they offer (and they offer plenty) is coming from the IDSA's views. http://www.cdc.gov/ncidod/dvbid/lyme/
As far as laboratory testing, here is one reason that there is so much resistance to the fact that tests are not reliable: http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm "These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease."
Check out the links along the side, including the "resources" to see where they stand. I think we should write to them and demand that they present both sides on their website. That's the least they can do since they are failing in so many ways when it comes to lyme disease victims. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Per your notes -- the 10 patients all had a negative ELISA. Is that correct?
Did they all have a positive Western Blot -- either by CDC or some other criteria?
Just wondering, because I know there are many patients like hubby who have both negative ELISA tests and Western Blot tests. These patients are often the sickest as they can't get anyone to clinically diagnose them.
If anyone is working to change the North Carolina law -- must remember that it needs to be changed to allow for a clinical diagnosis independent of test results.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
At the board's website is posted the NC Medical Practices Act, which presumably is a law. Here is the url: http://www.ncmedboard.org/
And this is apparently the relevant section for the Jemsek case:
"Unprofessional conduct, including, but not limited to, departure from, or the failure to conform to, the standards of acceptable and prevailing medical practice, or the ethics of the medical profession, irrespective of whether or not a patient is injured thereby, or the committing of any act contrary to honesty, justice, or good morals, whether the same is committed in the course of the physician's practice or otherwise, and whether committed within or without North Carolina.
The Board shall not revoke the license of or deny a license to a person solely because of that person's practice of a therapy that is experimental, nontraditional, or that departs from acceptable and prevailing medical practices unless, by competent evidence, the Board can establish that the treatment has a safety risk greater than the prevailing treatment or that the treatment is generally not effective."
So, the prevailing standard, regardless of how bad it is, is what they are enforcing. However, it does say that licenses should not be revoked solely because a treatment is experimental, unless it has a safety risk greater than the prevailing treatment. Seems to me that leaving a person at the mercy of a bacterial infection is a safety risk greater than receiving treatment, even IV.
I don't really see how this can be justified by their own regulations.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks for attending the hearing, but for the sake of bias, I'll give the run down on the hearing.
The man who lost his wife, this was a very sad occurance. BUT, there were many inconsistancies in the account.
First off, he had called one day to say that his wife was in severe pain. She needed meds right then and there, so because of his emphasis, they prescribed morphine pills, 2mg, for at most 2 pills per day. Overdoses of morphine are a known method of suicide.
Because of the morphine prescription, it had to be picked up at the office. This husband would have nothing to do with that, he had other things to do. Eventually he conceded and picked up the medicine.
Dr. Jemsek actually had little to do with this incident as the prescription was given not by him, but by another provider in his office. This provider did not want to give this kind of medicine without having the patient come in for an examination, because something could have been seriously wrong with her. But, because the husband pleaded so earnestly for his wife, and that she was simply unable to come in that day, she wrote the prescription, but HE had to pick it up in person.
As a side note, he and his wife went to an antique festival that day. Strange as his wife was supposedly unable to come to the doctor's office.
Also, when he called for the script, his wife was asleep, so she was unable to come to the phone. We don't know if she was the one asking for the morphine or not because we have no record of her pain except that expressed by her husband.
Later on, she died of a morphine overdose. The husband said there was no overusage of pills, but when the pills were counted by the police on the scene, the number of pills left in the bottle was no where close to the husband's description of following the prescribed instrctions of no more than 2 pills per day.
On the stand, when cross examined by Jemsek's attorney, he was asked whether he was suing Jemsek for a lot of money, he said no.
Then when asked whether his lawyers were suing Jemsek, he said, uh oh yeah, they are, but the trial hasn't started yet, so no I'm not currently suing Jemsek.
This man's motives are unclear. Did his wife commit suicide, did he kill his wife? Who knows?
One thing that's for sure is that it was well known that the wife adored Jemsek, and that the husband didn't care much for always having to help his wife use antibiotics, pay for treatment, or cater to the needs of a disabled spouse. He lost a lot of money in her treatment, so his motive for murder, or assisted suicide is certainly present. However, if he did assit in suicide, I'm not so angry about that as the suffering that we can deal with is amazing with Chronic Lyme Disease. I am angry that he is blaming Jemsek for something that he either assisted, or commited. If he wants to become a person who stands for strength of character, then he must stand with as little blemish on that point as possible.
The other witness was Jemseks fault. Though she kept begging to be allowed to have another line put in, mind her, SHE begged for this, not Jemsek.
However, it was quite clear she couldn't control herself, otherwise she wouldn't have had that many infections. Jemsek was wrong not to pull the line after the 2nd infection.
It is now his policy to do just that. So, in that case, Jemsek was at fault.
It doesn't mean he's totally to blame, obvioulsy this person was not doing her part, I mean who the hell gets 5 port infections?? Some of the blame lies with her, but as the physican, he should have seen that she was irresponsible, and IV therapy, with the risk of infection can't be given to people who lack responsibility unless they are given meds on an inpatient basis.
The third witness was straight full of ****. I talked to her outside myself. I don't even know if its worth going into, but lets just say she was the type of person who would tell you she's innoscent with blood on her hands. If there was ever a classic sterotypical white trash southern truckdriving woman, she fit the bill, and then some.
She said she had to spend 6 years in bed with fatigue, but that this was supposedly do to a long bout with Mono. I told her, trying to be a friend, that whomever told her that was simply in error. There does exist a form of Mono that can become chronic, BUT, that type of mono called SCAEBV, studied by a lady at Baylor University named Hellen Heslop. http://www.bloodjournal.org/cgi/content/abstract/100/12/4059
That form of mono is likely to be picked up on a blood tests because the antibody titers are not like mono antibody titers. For example, Mono antibody titers can be around 360IGG, but for this, they are something like 1200IGG. This kind of mono is NOT what this woman had. ALSO, people with this condition are almost exclusivly Japanese, OR at least have a close family relative no more than 2 generations removed of Japanese heratidge or a closely related genetic cousin of Japan.
She did not appear to have any Japanese blood in her. My point is that if she did indeed have CAEBV, and someone actually found that, then she would have been in a study by Helen at Baylor because the condition is so incredibly rare that she would have had records from a university hospital somewhere. She had none of the above.
ALSO, she had facial palsy PRESENT AT THE HEARING.
I asked her to look at her face in the mirror, and to see the facial palsy. She admitted that she could, but said it was because last week she had major plastic surgery on her face.
This was a complete crock of crap. It wasn't even on the level of a good lie. There is no such thing as a complete sucession of inflamation one week after major facial plastic surgery.
In all, the prosecution had one credible witness, the lady with multiple infections, they had one complete liar in that lady truckdriver, and they had one semi-credible witness in the father.
They had zero expert witneses. Both "experts" that they had who were ID doctors were just run of the mill physcians. They didn't have one academic ID physican testafy against them. ON top of that, the doctors they did have had almost no experience in either treating Lyme Disease OR even Studying Lyme Disease. From their testamony, it became painfully clear that these witnesses had read AT most the IDSA guildlines, and MAYBE 10 full leangth journal articles on Lyme. They had little knowledge of Borrelia biology, testing, or much else. I don't mean to sound arrogant, BUT I knew more about Lyme Disease than these two Doctors. WORSE, I could have argued the Camp A position better than these two MD's. I've read many, many Camp A articles on Lyme, certainly I've read more than 300 full leangth text Camp A journal articles, including the IDSA guildlines. In addition to that, I've read countless abstracts, AND I've even read the evidence that they fail to acknoledge though its is certainly repsented in the medical literature.
The point is that it was a very poor case. The only thing that the prosecution had going was a good lawyer because as far as an actual case, they had ****. Their two MD's were worthless in their knoweledge of Lyme, I could have argued their position better, and the only actual semi expert they had Jeff Engle, the state epidemiologst, was not credible because he had to go back on his statements regaring the risk of Lyme. He first said that it was rare in this state, but eventually conceded that very little research could prove that. The only thing he had to go on were Dog sentinal studies from NC State.
He said the state of NC had not done any tick exposure experiments for many years so he might be incorrect as to the true risk.
Our downfall was our lawyer, he was average at best. So, that's why the case turned out like it did. We actually presented a great case, we had legitamate experts, people who were extremely versed in the understanding of Lyme Disease, and credible patient witnesses who were healthy again because of Jemsek. We even had one person from the HIV community testify about the amazing things that Jemsek did for her to keep her from death though she's been HIV positive for over 16 years. She was an actress and B list Celebrity.
I give the prosecution that they had a rather good attorney, but as far as an actual case, no, any thinking person would concede that the case they built was like a man who built his house upon the sand (remember the Jesus parable).
Posts: 559 | From Cary, NC | Registered: May 2006
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TerryK
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Member # 8552
posted
Thanks for the information Lou. I agree with you but I think a big stumbling block would be in proving that a patient who does not meet the current standard for diagnosis would come to more harm if they were not treated with IV antibiotics than if they were left without treatment. Without the diagnosis, how would one extrapolate to show that ongoing infection would be more harmful than IV treatment? sigh
I assume they will eventually update this information with their formal findings and reasoning behind it. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Lymescience, thank you for your account of this hearing. My own doctor will be interested in some of the facts.
In your opinion, was this a case of the board going after an LLMD because of his views of treating Lyme, or because of these three complaints? It sounds like Lyme science (lol) was not overtly on trial.
It also sounds like this case and the other case on this board are because of medicines prescribed without actually seeing the patient.
I looked up the prescription information for morphine sulfate, and 2 mg is a tiny, tiny dose. I take 15 mg once a day, in the mornings when I am sickest and in the most pain, and even that would be considered very minimal.
What I cannot understand is why Jemsek would be liable for something another doctor prescribed.
After reading your account, I take it that the board is not going to interfere with doctors' ability to treat Lyme in line with ILADS guidelines. Is that right?
Thanks again for the account.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Sorry Jeff, I think maybe you are too optimistic about being able to continue treating lyme. The penalties part of it may well spell out that he has to use the prevailing standard of care, which they will define as CDC/IDSA.
That might not have been obvious because of the patient complaints, but notice that the complainants stories were questionable, and if it were not for the fact that he is treating lyme longterm, this case would have been investigated and never come to a hearing. Lyme treatment was the underlying reason, just camouflaged by these other issues.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Lou is 100 percent correct on that point. This case was about Lyme Disease. The board had been led to believe by the complaining experts, one that had been on trial, that this was all there was to know about Lyme, hence Jemsek was some kind of quack.
Its too bad that she didn't use the internet like we do for "inaccurate" information otherwise she might have been able to predict our arugments. Sigh, thank God some people are insanley arrogant.
The stipulations that are to be spelled out will most definatly make him treat more conservativly, BUT they will not make him treat with antibiotics differently I think. He will just have to be extra super cautious, doting every i, then dotting that i again.
The head of the board had a quote, and in that quote he said something like, Jemsek's methods may be the standard of care in 5 years, but for now he needs to inform his patients that it is not accepted practice.
It was very clear that though the prosecuter tried to discredit Fallon by saying he didn't treat patients, that Fallon's intimate knowledge of the disease put to shame everyone in the room who might have doubted him.
A point is that though he conceded that he didn't use antibiotics on patients often, save for research, that was only an important point for the attorney. The board heard an expert scientist.
As a group, MD's love words like Professor of Medicine at schools like Columbia University College of Physicans and Surgeons.
Fallon was brave to release his research, and the newspapers were kind not to release a lot of his infomation. They showed bravery by limiting their story the next day by focusing mostly on Phillips, and concealing much of what Fallon said.
The point was that when Fallon started speaking, after it was concluded he was a Lyme Expert, EVERYONE LISTENED.
His testomony on the science, and amazing knowledge of the intimate details of Lyme studies impressed the court. I'm of firm belief that it was directly because of Brian Fallon that Jemsek's suspenstion was given a stay.
So, it will make things tougher on Jemsek when he gets his stipulations, but they will let him continue to use long term antibiotics, and perhaps even long term IV's. However, I'm not positive they will allow long term IV's, I'll wait for the board to judge that.
[ 18. June 2006, 10:41 PM: Message edited by: LYMESCIENCE ]
Posts: 559 | From Cary, NC | Registered: May 2006
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Jellybelly
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Member # 7142
posted
Thanks Melanie, very well done. It seems that in order to protect thmeselves LLMDs every where will have to be vigilant about making sure every step has been covered. In what you have said, it seems we may have actually been lucky in the outcome.
Dr. J is only human and already no doubt sacrifices so much, but vigilance has to be fit in there in order to not loose the good ones.
By the way, you couldn't have been more concise, very clear.....unless all you really did was ramble and we have all come to understand that language so well, cuz it is atually how we think Posts: 1251 | From california | Registered: Apr 2005
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Thanks for the update. It is especially helpful to know the background of the witnesses as the newspapers offer such limited info.
Jeff,
Unfortunately not all Lyme patients can take Morphine. Hubby had a 5 mg shot once -- only time he has ever had this drug. Later returned to the ER for the 2nd time that day and he ended up being admitted to the Psych ward (morphine greatly exacerbated depression -- to the point of a suicide attempt).
If I remember correctly Lyme Too also had a bad reaction to morphine during a hospitalization. Don't know the dose she took.
Any med which acts on the brain and nervous system can cause a bad unforseen reaction in an unidentified subset of Lyme patients in my opinion.
Have no idea what really happened with this patient and I am not questioning the doc's treatment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Melanie and Lymescience:
I know it was alot of work to get to this hearing. A big thanks to you and to all the others who attended.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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I greatly appreciated your detailed reports on the trial. Thank you many times over.
I had been watching the trial like a hawk, feeling frustrated by the limited details available. As a chronic Lyme patient, I was very emotionally invested in it. I feel so grateful for Dr. Jemsek, though I have never met him, as well as Dr. Fallon. What great, impressive human beings. I hope and pray that neither of these men will become jaded and give up the fight.
We all need to become much, much angrier about the injustice of all of this - enough anger to fuel individual activism - not waiting for someone smarter or healthier to do what we can do ourselves! I have recently gotten involved in activism, and it has been very gratifying, and amazing to me the difference one person can make.
It saddens and enrages me to hear about the case of the husband whose wife died - to hear that he is going to sue Dr. Jemsek in addition to bringing him before the board. What a shame! Too bad his wife can not speak from the grave.
I have never been one to support over zealous legal action, but I have come to believe that it would be perfectly just for Lyme patients all over the country to report to medical boards the dozens of doctors who refused to test or consider Lyme disease in their patients with multiple symptoms who raised the question of Lyme disease as a cause. It was when I heard that my sister's pediatrician mocked her for being concerned about possible Lyme disease when she discovered a tick imbedded in her child's scalp that I finally got angry enough to start volunteering.
I think something that holds many Lymer's back from advocacy and activism - aside from feeling so ill much of the time - is a misplaced sense of shame about having the disease. I think many of us have internalized the arrogant and false reactions of many doctor's we have met along the way, and instead of feeling outraged by it, we feel ashamed or silly. This is a whole other big topic though...
So, thanks again for the time you spent filling us in.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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I greatly appreciated your detailed reports on the trial. Thank you many times over.
I had been watching the trial like a hawk, feeling frustrated by the limited details available. As a chronic Lyme patient, I was very emotionally invested in it. I feel so grateful for Dr. Jemsek, though I have never met him, as well as Dr. Fallon. What great, impressive human beings. I hope and pray that neither of these men will become jaded and give up the fight.
We all need to become much, much angrier about the injustice of all of this - enough anger to fuel individual activism - not waiting for someone smarter or healthier to do what we can do ourselves! I have recently gotten involved in activism, and it has been very gratifying, and amazing to me the difference one person can make.
It saddens and enrages me to hear about the case of the husband whose wife died - to hear that he is going to sue Dr. Jemsek in addition to bringing him before the board. What a shame! Too bad his wife can not speak from the grave.
I have never been one to support over zealous legal action, but I have come to believe that it would be perfectly just for Lyme patients all over the country to report to medical boards the dozens of doctors who refused to test or consider Lyme disease in their patients with multiple symptoms who raised the question of Lyme disease as a cause. It was when I heard that my sister's pediatrician mocked her for being concerned about possible Lyme disease when she discovered a tick imbedded in her child's scalp that I finally got angry enough to start volunteering.
I think something that holds many Lymer's back from advocacy and activism - aside from feeling so ill much of the time - is a misplaced sense of shame about having the disease. I think many of us have internalized the arrogant and false reactions of many doctor's we have met along the way, and instead of feeling outraged by it, we feel ashamed or silly. This is a whole other big topic though...
So, thanks again for the time you spent filling us in.
Anneke
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
I greatly appreciated your detailed reports on the trial. Thank you many times over.
I had been watching the trial like a hawk, feeling frustrated by the limited details available. As a chronic Lyme patient, I was very emotionally invested in it. I feel so grateful for Dr. Jemsek, though I have never met him, as well as Dr. Fallon. What great, impressive human beings. I hope and pray that neither of these men will become jaded and give up the fight.
We all need to become much, much angrier about the injustice of all of this - enough anger to fuel individual activism - not waiting for someone smarter or healthier to do what we can do ourselves! I have recently gotten involved in activism, and it has been very gratifying, and amazing to me the difference one person can make.
It saddens and enrages me to hear about the case of the husband whose wife died - to hear that he is going to sue Dr. Jemsek in addition to bringing him before the board. What a shame! Too bad his wife can not speak from the grave.
I have never been one to support over zealous legal action, but I have come to believe that it would be perfectly just for Lyme patients all over the country to report to medical boards the dozens of doctors who refused to test or consider Lyme disease in their patients with multiple symptoms who raised the question of Lyme disease as a cause. It was when I heard that my sister's pediatrician mocked her for being concerned about possible Lyme disease when she discovered a tick imbedded in her child's scalp that I finally got angry enough to start volunteering.
I think something that holds many Lymer's back from advocacy and activism - aside from feeling so ill much of the time - is a misplaced sense of shame about having the disease. I think many of us have internalized the arrogant and false reactions of many doctor's we have met along the way, and instead of feeling outraged by it, we feel ashamed or silly. This is a whole other big topic though...
So, thanks again for the time you spent filling us in.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Please forgive my delay in replying...I feel as if I am finally beginning to get my head back above water since the trip. These things are difficult at best, and I sincerely appreciate all who traveled to be there.
Yesterday evening I was interviewed by the San Mateo Journal about LD. Hopefully, I was able to convey the difficulties that we all face with diagnosis and treatment by using the Jemsek hearing as a prime example in what can go wrong when our good docs are not allowed to treat LD to their best ability when certain ``standards'' are adopted without careful study.
The reporter seemed intelligent and genuinely interested, and I left him with good written information and links to refer to, so we shall see.
LMT- Thank YOU for your support on this front, it is much appreciated.
Lou- I realize that you weren't criticizing; I only wanted to clarify my meaning. I also realize that you are frustrated, as we all are.
Michelle- Thanks for sharing your experience with the ELISA. Mine were also negative. Conversely, my WBs were extremely positive...go figure. I did have docs that tried to tell me that I could not possibly have LD based on the negative ELISAs. All I can say to that is...thank goodness for the internet!
Terry- Yes, the laws must be changed...this is why it is so extremely important for us to do all that we can in supporting any piece of LD friendly legislature that comes around. We cannot continue to sit by and hope that someone else is taking care of these things.
Bea- Yes, all 10 patients had negative ELISAs, with the exception of one patient that tested positive with the ELISA-6. From what I recall, this is a specialized test for some sub-class of something...(goodness, I think I am getting tired). Perhaps, someone else can clarify that point, please?
The patients DID however all have positive tests either with the WB or the FISH or the PCR, etc. Many were highly positive with these tests.
The point was raised about our antibody response or lack of, due to either testing too soon, or due to the body not being able to produce antibodies with extreme illness. Obviously, this was either ignored, or not understood. Or perhaps the board members simply slept through that little bit of critical information?
Science- I appreciate your account of the first day proceedings. I have to disagree with you on the evaluation of their lawyer though. In my opinion, he was cocky, arrogant, uneducated, condescending, and frankly...acting like a little ****-ant. You don't know me...but that is about as close as I get to swearing.
I actually, think that the board grew tired of him by the second day, and the board President made it very clear that HE would be the one in charge.
Jelly- Yes, all of our docs would be wise to adopt a written consent form that lays out the 2 standards of care and requires that the patient read and understand the benefit/risk ratio for long-term therapy. And thank you for understanding my writing- but I DO think that we all learn a bit of ``lyme-speak'' after awhile.
PQ and Carol- You are very welcome- I would not have missed it for the world.
Anneke- You reminded of something that either Dr. P or Dr. F said...(can't recall which right now). When asked what THEY would do if a family member came to them with a ``possible'' or ``probable'' LD infection...The answer was that they would treat immediately and aggressively!
Just want to say again how much I appreciate everything that you are doing and your reports on the hearing.
I have been really concerned about all of you soaking wet for hours. Still, the band of huddled patients in the rain certainly demonstrated committment and determination. I hope that everyone is recuperating well.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
Up for H...C....Dave who asked how things went.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Lots of great info on that hearing on the General Support board. Ann-OH
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