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» LymeNet Flash » Questions and Discussion » Medical Questions » Results of NC Hearing -- Dr J (Page 1)

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Author Topic: Results of NC Hearing -- Dr J
seibertneurolyme
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http://www.myrtlebeachonline.com/mld/myrtlebeachonline/news/local/15084046.htm

Bea Seibert

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MagicAcorn
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Thanks Bea for the link to the article.

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8man12
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A big loss for the lyme community,other doctors will follow.Its time for lymes to really do something,dont know what it is,BUT something.
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Lymetoo
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Pathetic. But at least he can continue to practice. SIGH.

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--Lymetutu--
Opinions, not medical advice!

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Aniek
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Given the possibilities of what could have happened, this may not be too bad. Any word from folks "in the know" or who have talked to Dr. J?

My understanding is they could have told him he couldn't provide long-term abx or IV at all. This suggests he just has to get consent and a second opinion. Could be much worse.

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"When there is pain, there are no words." - Toni Morrison

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5dana8
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Many thanks bea for posting the link.

I hope the catch here isn't the second opinion.

Does it have to be in the southeast? Will patients have to fly to other areas of the country to get a matching second opinion?

Because there is no one in the south east that I am aware of that treats chronic lyme for more than 10 days. And then only with a CDC positive test and a bulls eye rash.

And will insurance company's cover tx under the heading of research?

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5dana8

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northstar
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I may have misheard, but I think they said he had to diagnose according to CDC criteria. Now, does that mean 2-tier, or does it mean using the infamous 5 band survey criteria? I do not know. I thought CDC said diagnosiswas clinical. It was all rapid fire, and over quickly during the "judgment".

It also means no abx after 2 months unless corroborated. Again, what are the details of this? Corroborated according to what guidelines?

Details are scarce, and each statement brought up more questions.

Dr. J spoke with quiet grace. He appeared tired....but it was a scorcher: ozone & pollution were high, and it was stinkin blasting sunblaring hot. Heck, I looked stressed, too!

Hopefully, someone will come in with the exact words.
N.

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cbb
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Don't breathe a sigh of relief yet!!!

From the little that I've heard, there's a lot of uncertainty about what he can do & how he can treat.

My info was second hand, so I don't feel comfortable repeating details.
That needs to come from those who were present.

Reminder -
The CDC says that Lyme is a 'clinical' diagnosis. MMWR report of May 7, 2004 says:
"Clinicians are reminded that the LD case definition was developed for surveillance purposes and might not be appropriate for clinical management of individual patients."

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5dana8
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Thanks Northstar for braving the bad weather and bring back your impressions. I wish I could have been there. I am glad you where.

I am so sorry to hear Dr.J looked tired. [Frown]

He must getting weary of so much of this.

I do know that CDC clinical doesn't mean sqaut to most doctors that aren't LL.

Diagnosing according to CDC criteria doesn't sound good. Not good at all.

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5dana8

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david1097
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Remember that the board could not sanction a treatment approach that is beyond that published by IDSA or CDC. This effectively means that any other type of treatment is "research".

The only question is what requirements are attached to the "research" classification. This will have to be hammered out,out of public view.

Many Dr's that treat cases of last resort use waiver forms that clearly indicate that:

A- the treatment is experimental and may not work
B- the outcome of treatment may be used in presentations and publications.

This sounds like research to me.

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ConnieMc
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I was there. It is hard to say how all this will be interpreted. There are holes in this. I understood the board to say that he can only offer up to 2 months of IV antibiotics if there is a positive test. If no positive test, then there has to be a second opinion from another infectious disease doc FROM NC APPROVED BY THE BOARD who agrees with a clinical diagnosis.

But if you truly go by what the CDC says, they themselves say the absence of a positive does not rule out Lyme Disease. So are they to follow the CDC guidelines, meant for SURVEILENCE ONLY to rule Lyme in or out? That is not how these rules were meant to be interpreted.

Also, another question mark is whether he can prescribe long term ORAL antibiotics. Seems everyone in the room heard something different here. Wish I had a tape of it so I could listen again. Their ruling was short and sweet and they made each of the 3 points very quickly.

Dr. Jemsek himself said that they needed to really study the ruling to interpret it correctly, and they are to let the NCLDF know what the outcome is of further discussions.

Hey, in my mind, this could have been worse.

Dr. Jemsek gave a wonderful speech to plead his case. Bottom line ... he thinks his clinic is doing lots of good.

Of course, one other question that comes to mind is whether these restrrictions are just in place for a year or forever. Noone seemed to know.

If he wants to prescribe more than 2 months IV, then he has to do it under the umbrella of a research study affiliated with a university with a board who is charged with approving the study and it's design. I will tell you one thing ... you will not find that here in NC. All teaching hospitals in this state are very anti-Lyme.

We will get more info to you as it becomes available. We will have a planned response. We were told to keep quiet before and during the hearing. But no more.

Will keep you all posted.

Dr. J looked horrible and I was worried about him. He risked his life, his career, and his livelihood on us. His reputation is tarnished forever. I feel there is some chance that insurance companies were behind all this. Trying to bring him down as he costs them too much money. IMO, it is all about $$$. I am sad for the patients in this part of the country who have Lyme. One woman there was in tears as her 23 yr old daughter was in the middle of IV and very sick. Under these rules her picc is gone. What do you say to someone like that?

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ConnieMc
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One other point ... in a way the medical board had no choice. Their attorney relied heavily on the LAW and how it reads here in NC. He referred to specific laws and case law which has come about over the years as a result of the law. In NC it is illegal to practice outside the accepted standard of care. I will attempt to find the laws and read them myself so I can see if that may be a way to approach this. In this instance, the meaning of the LAW will come to actually hurt many people. Dr. J focused on the fact that medicine is an art and things change every day in medicine. He is right. But things are not far enough along in Lyme research to make his methods any where close to a standard of care. The government is very much to blame here. They are letting a very deadly, debilitating epidemic go and have put very little money into this. For what reasons, who knows. Steer, etc must have some sort of agenda. Was this some sort of biowarfare accident? Are there those who originally worked on this and made various assumptions too afraid (or arrogant) to admit they were wrong?

The only way to expose this fraud is to produce research that is contrary to what they preach. There must be a reason why this is being supressed. AIDS/HIV people had to really make some noise before they were taken seriously. I feel this may be the only way for us.

I can only hope 10 years from now things will be different. I have had Lyme for 8 years now, since July of 1998. I diagnosed myself by reading up on Lyme after someone mentioned it. But still took me 2 more years to find someone to help. I wrote all those docs who laughed at me and said no Lyme in NC once I started with Dr. Jemsek. Did no good. They are the ones who should be held accountable for leaving me to rot for those 3 years. First do no harm. Whatever happened to that?

Now the mewdical board is throwing so many people to the wolves. Makes no sense. If they think they are protecting us from a bad doctor, as BCBS says they are, they are sorely mistaken.

Venting this has been therapeutic. It has been a hard day.

Stay tuned for more interpretation. I will keep everyone posted. I will make a good Lyme activist!

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5dana8
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Thanks ConnieMc for posting.

I am in tears to hear about how Dr. J looks [Frown]

And am devastated about the future of his patients [Frown]

The medical board has blood on their hands.

Please keep us updated. Thanks so much for being there.

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5dana8

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Thomas Parkman
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Well good people, may I suggest you go back and read my earlier posts. They have cut the man's throat. Anybody who cannot see that needs to get glasses and learn to read. This is a disaster for us, an unmitigated disaster and these people who keep saying it could have been worse etc are doing everybody an enormous disservice. Kind of like the Jews in the housing in Trebchen in Czechcoslovakia during WWII saying how good the Fuehrer is too us as the trains leave the station for Auschwitz. That was Hitler's model village for Jews waiting to be sent to the death camps.

That is what the NC medical board in its assinine stupidity has done, send god only knows how many people to a horrible life of suffering and a ghastly death at the hands of these MD money sucking ghouls who fatten themselves on the sick and dying. Too ugly for you? May I suggest you need to wake and get real.

The only thing to do now is to figure out a way to hurt them and hurt them badly. Other than that you are doing nothing but spinning little old lady hot air and wasting your time. As usual, a prophet is not without honour save in his own country. Thomas Parkman

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Thomas Parkman

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5dana8
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It's easy to say "lets hurt them" but how?

I don't see any other way to hurt them. Any other suggestions?... Without the use of fire power, the best way to hurt them is threw their pocket books and reputations.

Believe me I want the board to suffer the way they are condeming many people to suffer... They have taken dr. J's license away from him without taking it away...which is cowardly.

[ 20. July 2006, 09:08 PM: Message edited by: 5dana8 ]

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5dana8

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Lymetoo
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Have we ever tried a letter writing campaign to the CDC? Can't we complain about all the people they are leaving to suffer...and each day it gets worse? [rant]

It might be good to have it documented in letters. Maybe by law they have to keep them.

I don't know. I'm just at a loss. I'm so sorry for Dr J and for the NEXT dr to fall.

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--Lymetutu--
Opinions, not medical advice!

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ConnieMc
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Anyone who has any concrete feasible ideas on how to respond to what has happened, please PM me. Anyone in other states had a similar occurance and had a successful response?

As I said in my second post, the laws are a real problem here in NC. So we need to go at this from that angle as well.

I am fearful of posting too much info about a response here, as no doubt there are trolls about. Whatever we do, I do not want them to have prior notice. We need to catch them off guard. We need to make ourselves known. We need to tell EVERYONE of our plight.

So, ideas please. How do we do this?

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5dana8
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ConnieMc

I am sending you a pm.

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5dana8

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LYMESCIENCE
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I don't know what we can do right now. I wish I could have been there but I had an appointment today at 2:30 at the Jemsek Clinic.

If you ask me, the suttlieties of this case point to Blue Cross blue sheild. The point is they are trying to remove Jemsek from the State of NC. Why?
Money!

If one closely reads the press releases, you will find one angry Jemsek patient make an interesting quote in which he was upset over how much money his poor insurance company paid for his wife's medicine.

Below is a little sarcasim relating to Blue Cross in case it wasn't plainly obvious:

I can't begin to tell you how much I cry at night thiking of those poor people working at Blue Cross who are now without health care and homes all because of that mean Dr. Jemsek who made them pay such outragous fee's. It really is shamefull when you think of all the many families, husbands, wives, and children in the Blue Cross Blue sheild family who were clearly misled by Jemsek. I feel so badly for Blue Cross, sorry...... I'm crying again, I just can't ... believe ( sob sob sob) that this company lost so much money (sob sob sob).

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LYMESCIENCE
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The fact is that the legal standard of care, though I will look up the "laws" myself are set not by medical guildlines per published from 1 medical entitiy, in this case the IDSA, but rather refer to guildlines published in peer reviewed literature.

Now, there may be stipulations in the law that specifiy the IDSA as the only source of legal guildlines for infectious diseases.

However, I have serious doubts that the law makers in Raleigh are that clear when they write things like laws. Certainly the Congress located in DC isn't that clear, so my doubts are highly suspect in considering such a legal standard in a state congress, in any state, being written in such a way that the specificity far exceeds a national legistlature.

However, I could be wrong.

So, the point regarding legal standard of care may have been an argument relating to law that was actually a fictious argument only alloweable because the lawyer argued effectivly, or: Jemsek's attorney was a bonehead reading the law and just accepted, for good measure of course, the interpretation of research as conducted by the incredibly honest and well meaning Medical board attorney. Of course, the attorney presenting the law in a full and balanced way is exactly what happened right?

I wasn't at the hearing today, and I can tell you that he presented the law not as it had been interpreted in an incredibly specific way, but rather in a way specific to his political viewpoint.

Should we blame him, I don't know, all good lawyers should(or rather in reality all DO) lie about the law when presenting the arguments upon sentencing regardless of the case.

However, as I'm not well versed in medical board law, I'll have to get someone else to look in on this.

My understanding was that our attorney straight blew, and, what shocks me is that I can come up with several reasonable legal arguments that directly contend with the law as presented per the opinion of the prosecuting attorney.

My experience in law, 4 years as a lawyer in Teen Court of North Carolina, and a lot of work in high school with mock trail.

Now, thats extremely sad if someone with such scant experience can readily and easily critasize the work of a supposedly experienced lawyer, namely the one represting Jemsek.

It still blows my mind that, if these law based arugments as reported are true, can actually have been taken as fact and not disputed by the attorney.

Total crap!

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northstar
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Connie,
email sent
N.

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northstar
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Re: lawyers:
yes, needed someone with moxy. Both lawyers were
soporific.

Law is based on interpretation and precedent....which is what all the law journals are about. One needs to be creative in interpreting and bringing in previous directly and indirectly applicable cases, and logically arrange them to make a point.

The only case the board lawyer brought up at the judgement session was about a homeopath, which they felt was putting the health of the population at risk. That they would use homeopathy as a comparison to Dr. J's work was ludicrous.

Not much of a comparison, and besides, restricting medication puts us at risk too.....no peeps heard about that one. Definitely need more moxy...

N.

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northstar
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Re: oral Vs. IV

I heard the term "antibiotics and IV's"........to me that implies orals are included, but guess we will have to wait for official word.

I rarely make requests during my infrequent prayers, but think I will include a request for peace, grace, strength, and healing for Dr. J. and for all of us on this path.
N.

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cbb
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I'm not familiar with Medical Board Hearings.

Can Dr J appeal the decision?
If so, who does he appeal to?

I've been told that in an appeal, you can only work with the evidence that has already been presented.
It sounds as if an appeal is a review to see if the decision reached in the original hearing was correct.

Just wondering cause no one has mentioned the possibility of an appeal.

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ConnieMc
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Dr. J's atty never really explored alternate interpretations of the law at all. I,too, thought it was ludicrus that he was compared to homeopathic medicine. This is not the same. I felt the whole time that the last speech by Dr. J's atty was in desperation but little about law and how it should apply in this case. Certainly he could have researched the law and somehow countered this. Perhaps he tried. Instead he took the approach that Dr. J was someone above the law and should not have to follow the law, as he is making valuable progress in the field of fighing Lyme. The law is the law. The end.

And that was the bottom line reason we are where we are.

This will be a big ordeal and will take lots of time. But we must unite and fight. If we are not successful for ourselves, then we must work for future generations.

Sure would like to have a bag of Lyme infected ticks to place in strategic locations. One of these people will need to take a walk in our shoes to realize our plight.

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ConnieMc
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quote:
Originally posted by cbb:
I'm not familiar with Medical Board Hearings.

Can Dr J appeal the decision?
If so, who does he appeal to?

I've been told that in an appeal, you can only work with the evidence that has already been presented.
It sounds as if an appeal is a review to see if the decision reached in the original hearing was correct.

Just wondering cause no one has mentioned the possibility of an appeal.

I have wondered that myself but have no clue. If it is possible to appeal, I am sure he will.
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LYMESCIENCE
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you have got to be f-ing kidding me. He was compared to a homeopathetic physican, AND THAT WAS THE LEGAL ARGUMENT.

WOW. That is absoulute Insanity. I could have presented a better legal argument. Law is about right and wrong, yada yada yada, and that is all good for a jury who decides things based on emotional outcomes.

But any bonehead lawyer knows that to win a case, one needs emotional reason, AND LEGAL ARGUMENT.

This is what shocks me about the world. The USA is the greatist country in the world, hands down, and THIS WAS A CASE IN OUR LEGAL SYSTEM. Are we certain the arguments presented here, and the case, weren't actually presented in say "mock trial, the legal arguments used by grade school students pretending to be lawyers"

A legal argument, which, and I hope this doesn't sound arrogant, but one in which I could debunk in less than a week's research with a highly technically based legal rebuttal tells me that incompetence in law is a common practice.

That the "winner" of a legal argument could compare a homeopathic physican with ZILTCH peer review in the medical literature, to a Medical Doctor published in many large peer reviewed journals on HIV (including several in the NEJM) based on things like say... I don't know science just blows my mind.

Its not like I even care what the outcome is now that I've heard the arguments presented. Honestly, Both lawyers sucked, and they sucked bad,

I mean come on, your best, and let me repeat that, your best arugment conerns homeopathy? Dude, find another living, you totally suck *** at law.

The guildlines which Jemsek followed are peer reviewed and published on a .gov website, and in scientific journals. These are the kinda things for which the government isn't supposed to activly discriminate. Remember all those extra laws and ammendments that were passed circa 1950's and later. Well, they kinda frown on governmental predijice based on individual political affiliations so long as the other opinion is not clearly fradulant. Clearly, this is not the case with the guildlines published by the ILADS.

They support their research with actual science.

That is not the same as homeopathy, which has theories, but, science.... I think not.

I am still shocked.

Both attorneys were terrible, its only that the attorney who was less incompotent (though still incompotent) won the case.

This case wasn't about science, publich health, or the law, it was about which lawyer had a smaller brain.

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5dana8
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I also hope Dr. J can appeal. And I am deeply deeply sorry for the pain he has been thru. [Frown]

This is going to sound selfish but there is a point to what I am about to say:

What are we supposed to do now? Leave our homes and sell everything and move to one of the few remaining states that still treats chronic lyme?

What happens then. When the doctor we are seeing gets taken apart by another medical board? Move again. Lose everything again and uproot ourselves.

We are to become traveling gypy's? All because of some greedy medical board/insurance companys/gov agency's and bruised egos or even some bad laywers.

Or do we just rot away at home?

[ 21. July 2006, 12:58 AM: Message edited by: 5dana8 ]

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5dana8

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5dana8
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Is it possible to sue the federal government?

Seriously.

Because they gave the medical board the power over us to do this. I don't know much about NC law but I do know the sh!t the government and its group of nazi mouth pieces have dictated the "law" about lyme and it's treatment.

--------------------
5dana8

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LYMESCIENCE
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good question. I think it might be... because they seem to say that the CDC guildlines should be followed, and have this as part of their ruling.

So, since that is a fictious statement, which is can EASILY be proved to be a fictious statment in no more than two simple steps (which is why I was so incredibly shocked at the legal reasoning. I expected a somewhat plausable legal argument. The one presented isn't plausable to anyone with even limited legal understanding. My dad's a lawyer and I talked with him tonight after reading about the arguments presented, and he told me to get a copy of the hearing because that sounded too crazy to be true)

So, maybe those weren't actually said in court. If they were, the case was crap.

Better yet though, if this stuff is in writing, we may be able to sue in federal court, but we'd be suing the state of North Carolina rather than the US Government as it may prove hard to sue the CDC on this issue even though a law was passed in 2002 by both houses of congress and signed into law by President Bush that the CDC was supposed to make an active attempt to make sure that the surveillence criteria weren't part of state legal hearings.

So, maybe we can get them for not following federal law (the CDC that is) and interviening to get the State of NC Med Board to actually follow the law.

But my guess is that the lawyer for the CDC is going to be a lot smarter than the lawyer for the Medical Board was. In that case, the lawywer for the CDC would prolly present a legal case I couldn't easily debunk in a week with a highly technical legal argument.

Why? Because he would probally be an incredibly intelligent legal mind who specialized in just this sort of thing. The guy who argued against Jemsek was not the same kind of adversary, that lawywer was a moron. The CDC's won't be a moron.

So, basically, that leaves suing the state of NC in federal court.

Can this be done?

Assuming that the court record holds weight in reference to the legal case presented, Yes, we can sue the state of NC in Federal Court. AND, we probally have a good chance at winning.

I can list several constitutional arguments, right now, I can think of at least 5 ammendments to base a reasonable legal case about. I'm not gonna list any more legal info just incase the trolls are out.

But, if the above report is true, we would have an EXCELLENT case in suing the state of NC in federal court.

However, we would need a lawyer who actually had a brain, and to afford one of those, we would prolly have to get him to work pro bono until awarded a settlement, or he/she would do the work simply for the chance to most likely argue in the Supreme Court, or a high ranking Federal court for the fame of being the attorney in a high profile case.

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Tincup
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I haven't checked the laws lately...

But is it still illegal to tar and feather folks in North Carolina?

Grrrrrrrrrrrrrrrrrrrr........

[Mad]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Mo
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Hey - I've been going though some severe personal violations myself. One thing that has really helped me: Do not look at something as horrific as this as an obstacle. Look at it as tho you CHOSE it to happen. Then act. What can we make of this?

Just a guess: perhaps it is time we get more vocal, and more effective - and begin to recognize and act on our LEGAL rights to care, and our freedom to CHOOSE. It's up to the patients now, regarding ALL our LLMD's.

Are medical boards allowed to practice medicine through dictating treatment methods used by a particular physician?

To me, it's either take the license - or not.
By curtailing a physicians practice in treating a disease that is well documented to require individualized care once it is chronic -
are they not practicing medicine in a treating physician capacity in holding the puppet strings pn this Doc as he treats his patients??

Will they not be accountable when the first patient dies of heart block or encephilitus?

Will they not be responsible for wide-spead disability cases?

What of NC residents' civil liberties in choosing which standard of care they wish to
pursue? Can the medical board strip you of that?

Discrimination? Civil rights violation??

The CDC does not have treatment guidelines on Lyme. Their criteria was set for reporting purposes, not diagnosis or treatment.
They clearly state Lyme is a clinical diagnosis, and say nothing about treatment of chronic lyme that I am aware of.

Appahrently, the CDC is smarter than the NC medical board and their attorney. At least the CDC acknowledges their role.
Seems to me, those guys F***ed up royally, and stepped well outside their ROLE.
Their role is to POLICE bad docs, not practice medicine!

There are TWO standards of care. Not one, TWO.
If NC Law says otherwise, those laws are ignorant.

This whole thing sounds insane. Yet they did it.
Hell -- just because it was in court, does not mean it's just.

I have to wonder about the attorney myself.

Rally around these Docs. I believe there is something you can do here, but I'm not an attorney - tho I agree if we can see through this, someone with legal expertise should be able to respond effectively.

We have Doc Jones in CT with similar guns pointed at him. I pray we are not standing here in the same position with him in a couple of months. There is not other state to go to in treating chronicity in hundreds of children.
Doc J's attorney is excellent, but winning these cases costs a great deal of money. Please all support him, his win could help all the others. Perhaps if he wins the Jones case, he could take this one on, or offer consult.

If we loose BOTH these Docs (in their capacity to treat as they know how) - these decisions will be very difficult to fight. The chronic Lyme study and the federal bills will be roundly impacted. None of the other Docs will be safe.

Fight in NC, and fight in CT. We're all in this together now.

Mo

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mimi
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[cussing] So I guess we are supposed to just get well on our own [confused] This is tragic for us all. I have an appointment tomorrow at his office. I am scared to go I don't want to have my picc pulled. I finally got the 28 days and there are many more like me. Dr. J has worked so hard for us and he doesn't deserve this. What can we do?
I am so sad for us all
mimi

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tykee
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Hello everyone,
I have been trying to figure out my options. I did 6-1/2 months of IV and improved, but not "fixed". I see my only option as flying to Mexico, seeing the cliff divers and getting antibiotics.

At least Dr. J taught us what we need to take to avoid a total relapse! Anyone interested in cliff divers?


Tykee

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Mo
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Think - fight ..

Lymescience, your mailbox is full.

Mo

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Anneke
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My dear fellow Lyme patients,

I feel absolutely outraged and saddened to hear the news today of Dr. Jemcek's hearing. I'm writing from California, and I am so sorry for Dr. Jemcek and for all his patients in NC.

What this hearing should have been is a hearing honoring the courage and brilliance of Dr. Jemcek! He should have received great esteem, encouragement, honor and respect from all of his colleagues in the medical world in NC, and from the general public for his service.

In some cases, how the board responded is LAUGHABLE, if it weren't so tragic. Mandating that Lyme patients get a second opinion after his diagnosis?? Who is going to give the second opinion?? What doctor is going to stick her/his neck out to become the next Lyme martyr after a hearing such as this??? The irony is that the patients who finally get diagnosed by him have usually seen multiple doctors before arriving at his door. Unless independently wealthy, where will they get the resources to travel great distances to other states for experts who are treating it?

The issues raised in treating this disease are so incredibly complex, and every possible loophole was used against him. Then they leave him hanging with strange restrictions that don't account for all the unknowns and complexities?

What is this weird restriction about treating with antibiotics for no longer than a month unless the patient is in a research study??? Everyone knows how restrictive these studies usually are - there are usually multiple criteria to be met for a subject to be counted. Studies require FUNDING, time and effort. studies are open for participants only at certain times, and only when there are ongoing studies to put them in. This restriction will leave out SO MANY suffering PATIENTs, WHO DON'T NEED A RESEARCH STUDY TO TELL THEM HOW MANY OF THEIR SYMPTOMS HAVE RADICALLY IMPROVED ON ANTIBIOTICS!! Is the patient's "reporting" to be completely invalidated, ignored, discredited?

This news is MADDENING!!! i too, wish it were possible to strategically place some infected ticks in the offices of some powerful, but failingly arrogant and ignorant people. Do you think if they developed the symptoms and remembered a tiny tick bit but no rash - do you think they wouldn't seek antibiotics at any cost? I certainly can't imagine them applying the same stupid guidelines to their own debilitating symptoms.

The icing on the cake was hearing that one of the patients was moaning that her/his insurance co. had to pay out needlessly!! I'm sorry, but that smells incredibly fishy to me. Honestly, I would not be surprised to read at some point that it was found that a large insurance co. paid off patients to come forward against Lyme doctors.

There just have to be dark forces at work (ie money, greed, ego) at a level invisible to our as yet, available radar. Nothing else would explain what we are seeing at a national level - the persecution of some of the bravest, and brightest medical doctors out there for the great sin of treating chronic, late stage Lyme disease.

I wish I had the resources financially to hire a squad of elite private investigators to look for the links and corruption between insurance companies and medical institutions such as the IDSA. And further, to go after the idiots like Speere and Shapiro to see who is paying them off.
Oh, and to follow these people who came forward with allegations against Jemcek. Do they or do they not have Lyme disease? If what they had was not Lyme, what do they have? Are they better?
Were they paid by someone to come forward and attack Jemcek?

THERE ARE SO MANY UNANSWERED QUESTIONS HERE, AND WHAT SHOULD HAVE BEEN A PUBLIC HEARING IN AN IDEAL WORLD TO HONOR THE WORK DR. JEMCEK DOES, AND TO RAISE MORE RESOURCES FOR RESEARCH AND SUPPORT - ENDED UP BEING AN IDIOTIC FARCE.

Thanks for listening...

Anneke

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lou
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In other states where this kind of thing has happened, the patients did not just wring their hands and complain. They fought back. Look at California. Look at the fight in NY. It is true that nowhere are things ideal, but fighting it in your own state is the way to get some breathing space, so you will survive the lyme dark ages.

So, you have got to kick up a fuss!

Use the energy and money you will have to spend anyway to travel elsewhere (where?), or try to survive with no treatment, on fighting this.

It is unfortunate that lymies are so poorly organized. They just sit in their own little corners feeling like they are alone and ineffective, just pawns. Ok, so it is a big fight and uncertain in outcome. Doing something is always more effective than doing nothing. Get your support groups more organized, use them as activism centers. If people call and complain about their situation, tell em the situation. They have got to see that they must take part in the struggle, not just sit sadly on the sidelines.

And another thing I would point out, is that I previously posted an extract of the NC law. There is a clear exception, an out, for this kind of situation, which his lawyer should have used. This seems to have been a very poor choice of a lawyer. The board is interpreting the law the way they want to, to arrive at a predetermined course of action. So, do you want to just be victims, or are you going to fight this arbitrary misuse of law, to protect the profits of insurance companies?

Anyone who expected real justice to be done in this case is either new to lyme or has learned nothing from the events elsewhere in the country for the last ten years. This was absolutely predictable.

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northstar
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Lou,
pm sent.
Northstar

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LYMESCIENCE
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I'm new to Lyme. I expected justice. My nievity is now gone.

I plan on fighting, and fighting back hard.

Concessions didn't work with Hitler, and they won't work with the people fighting against Lyme Disease patients and doctors.

Like any bully too stupid to understand diplomacy, somebody needs to smack them upside their heads.

Comon NC, its time to FIGHT!

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5dana8
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Yes." Its time to tke off our gloves and fight back."

"kick up a fuss"

"hurt them"

Any concrete ideas would be helpful. Other than fire power and letters.

Please don't take offense but the letters didn't seem to effect the outcome. I sent my share of letters in as so many people did. Along with a long petition.

Or are we directly them to the wrong place?

--------------------
5dana8

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ConnieMc
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An organized response will be coming. First, though, we need to wait to hear from Dr. Jemsek, etc with their interpretation of this ruling. I think everyone agreed yesterday that some of this is open to interpretation. That needs to happen first.

I will keep all posted on developments.

This will not happen overnight. Dr. J has lots of patients on IV and it is not like he can have all those patients in today to pull piccs. I am sure things are on hold now pending further discussions with his reps.

One note, I saw 2 newspaper articles that referred specifically to the fact that there was a max of 2 months IV once the diagnosis was signed off by another ID doc from NC approved by the board. Orals were not mentioned. There are many, many people who have either seen progress on orals or continue on orals following IV and have done well. So if this is the case, at least that is one sigh of relief for so many in that situation. We will hope I am correct.

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northstar
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We respected Dr. J's need to handle HIS hearing with HIS method. It was about him.

My firm belief is we all took the appropriate actions, but incompetency, and hidden agendas tripped everyone.

However, the rulings now will affect us directly. Before, it was a threat, now it is a reality.

But the dust has to settle first

This does not mean I will do nothing....to the contrary, it helps me to keep a log of any info (research, legal stuff, relevant postings) and suggested courses of action, that I feel will be of benefit to the NCLDF for when they are ready to procede

This is approach is a comparson of shooting wild buckshot vs. doing surveillance of the situation, intelligence gathering, spotting weak spots, etc which will lead to actions that will be focused and efficient. By actions, my intent is such that rallies will play a part, but legal/legislative action are the foundation.


N.

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Mo
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Really --
this is proposterous.

The board may have been able to pull this off in kangaroo court - and make this ruling on Doc J --

but (it is my belief) they can not get away with doing what they are doing to the PATIENTS..
unless you let them.

-- it will take organization, working together, and looking for effective help.
Be careful not to go off in separate directions, or to let this become a split battle between Lyme groups -
that always trips us up, in every state.
Be bigger than the rest in Lyme issues and stick together on this one for fast and effective results.

There is something very wrong here. Seems to me,
advancements in care and politics could be well utilized - this is an access to care issue for hundreds of you.

Don't let the board take away your right to health and medical care.

Mo

[ 21. July 2006, 03:02 PM: Message edited by: Mo ]

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northstar
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----------------------
From the Charlotte paper:


Board sets limits on Jemsek's work
State panel requires consent, 2nd opinions
KAREN GARLOCH
[email protected]


The N.C. Medical Board imposed restrictions Thursday on the practice of Dr. Joseph Jemsek because of his unorthodox diagnosis and treatment of Lyme disease.
Last month, the board suspended Jemsek's license, but stayed the suspension, allowing him to continue seeing patients in his Huntersville clinic.


Several witnesses testified that he misdiagnosed them with the tick-borne illness and treated them with intravenous antibiotics for many months without telling them the treatment exceeded the standard.


The board imposed four conditions on Jemsek's practice.

*�Patients must sign informed consent forms explaining that Jemsek's treatment differs from that of most N.C. doctors.

*�If a diagnosis of Lyme disease isn't supported by tests that meet the U.S. Centers for Disease Control and Prevention criteria, a patient must get a second opinion from an N.C. doctor approved by the board president. The patient would be free to decide which treatment to pursue.

*�Treatment with antibiotics for longer than two months must be part of a research project approved by the board and monitored by appropriate authorities.

*�Any complications of treatment must be addressed immediately.

Jemsek said he felt optimistic about the board's ruling.
"It's obviously not ideal, but I think it shows the board is working with me in trying to protect patient interests and still see that medical care is carried out," he said.


http://www.charlotte.com/mld/charlotte/news/breaking_news/15087980.

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ConnieMc
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So this one says "antibiotics" in general and does not distinguish between IV and oral. Do they have any idea how much it will take to pull all patients on orals off because they have already exceeded the 2 month limit?

Man, oh man, I await more clarification. The reports are different. Guess it will depend on what is actually in writing from the board.

If he also cannot prescribe orals for more than 2 months, then we all all screwed. I am on maintenance protocols and depend on these to keep me well. I also have periodic relapses and run through a protocol for both Babs and Lyme periodically. So what will happen to me when I no longer have drugs? I will lose the quality of life I have gained back through the expertise of Dr. Jemsek.

Wonder what the chances are of him finding a few ID docs approved by the board who will buy into all this? IMO, difficult. Even then, the ones who are the sickest will be given the first shot at the appointments with these docs to obtain an opinion as to whether this treatment is appropriate. Several ID docs from here in NC testified AGAINST Dr. J. And no way others will stick their neck out and risk being pulled in front of the board themselves.

And since all these orals will also be under the confines of a research study which for now does not exist, it could be several years before this is all into place.

I am speechless. This is huge.

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bettyg
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Thanks Bea for posting, and everyone's comments from having attended yesterday, etc.

Is there an email address we can send a PM to Dr. Jemsek? He needs his spirits lifted now; I don't know him .... only thru YOU, his LD patients! Thank you. [Big Grin]

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bettyg
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Thanks Bea for posting, and everyone's comments from having attended yesterday, etc.

Is there an email address we can send a PM to Dr. Jemsek? He needs his spirits lifted now; I don't know him .... only thru YOU, his LD patients! Thank you. [Big Grin]

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LYMESCIENCE
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Yes connie, now ya get it. This is HUGE! I was at Jemsek's yesterday and my understanding was thus: 60 days max for antibiotics, whether they be IV or oral.

The point was that Blue Cross knows the kind of treatment that patients with chronic Lyme disease require, and that treatment is long term antibiotics.

However, they don't care much about oral antibiotics, but they do care about Joseph Jemsek in THEIR STATE.

So, how can we kill his practice they said to themeselves? Well, since he is gonna be practicing again in one years time, how about we make it difficult for him to stay in buisness, in other words, lets financially ruin this man. So, the process is in steps, 1st-blue cross is making Jemsek AND his patients pay back something on the order of 10-20 million for Lyme treatments which extended 60 days over the past several years Jemsek has been treating Lyme. Second, just in case patients still stay with this man, and maybe allow him, through patient visits to be able to pay his bills without going under, we will make it so that he can't even give out orals (even though we don't really care about that), and then we effectivly kill this practice. What happens to the HIV patients? Well, at Blue Cross, we couldn't care less if they happen to be patients at Jemseks. Our priority is never again having to pay for Lyme Disease in the state of NC.

So, here ya go, its both orals and IV's- no more than 60 days.


You can go ahead and thank Blue Cross. It is no coincidence that all these things happened at the same time.

1-blue cross drops jemsek as a provider
2-blue cross wants money back-several millions from PATIENTS as well as JEMSEK
3-Charges against Jemsek
4-Jemsek Guilty
5-no more than 60 days antibiotics
6-scare other doctors so no one will agree to consult in NC

Pretty interesting that all these events happen at exactly the same time....... coicidence, or causation. I think causation.

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LYMESCIENCE
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Another interesting tidbit. The doctor's who "investigated" Jemsek and were behind a lot of this were also working for Blue Cross, in fact, Blue Cross hired them, then suprisingly, we have a court case.

BTW, I know the above statment to be one of fact, as opposed to opinion, and I know where the doctors work, though I don't yet know their names.

I won't post any more info like this online. But, suffice to say that in this instance, and I'm not big on conspiracy theories, there exists a conspiracy, at least in this case, AND I believe it can be validated with hard facts.

Fight back, WE WILL.

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newdurham77
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Lymescience,

how sure are you that the BCBS is asking money back from patients??? that would be completely outrageous!!!!

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ConnieMc
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Lymescience ...

Just curious. Did they give you prescriptions for antibiotics yesterday? Are you on IV and/or oral? The board knows full well this cannot happen overnight. Is there a grace period? For those on IV, do they expect everyone to make an appt (which the insurance co will no longer pay for) to get their piccs pulled today?

Has anyone determined whether this can be appealed? If so, if it was, wouldn't put everything on hold and allow him to keep treating?

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ConnieMc
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quote:
Originally posted by newdurham77:
Lymescience,

how sure are you that the BCBS is asking money back from patients??? that would be completely outrageous!!!!

Yes, they are. I heard this from a good source.
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ConnieMc
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I think there is little doubt that this will end up as a class action lawsuit. We have no choice. Our right to choose our own medical treatment is being denied. Irregardless of the insurance issue, which is actually a separate issue, we aren't allowed to buy and pay for and decide for ourselves which standard of care we would like to pursue.

No doubt BCBS is behind this. But this ruling goes further than this. Now many of us will be unable to keep ourselves well by continuing medical care. This is a persistent infection. They have thrown us to the wolves. To a life of disability and despair.

And a small few who were not satisified with their treatment are also responsible for this. They are the ones who started this by writing to the medical board in the first place. What a shame hundreds, even thousands will need to suffer because of a disgruntled few.

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3greatkids
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I think you are right about BCBS LymeScience.

It makes me sick,this entire hearing and total sweeping of Lyme disease under the rug by NC.

What is even worse is the newest TV commercial now out by BCBS of NC.

BCBS has a little girl and Mom sitting on the beach.The Mom explains how she has never heard of migraines in young children.UHHHHHH!!!!

This commercial just came out after Dr, J's first hearing and has been running heavily before this second hearing and will run now.

Children w/ migraines...of course...but children w/ Lyme and these headaches?BCBS running these ads on TV....think of the kids that will not get treated for Lyme now.Many going to camps here in the state,loaded with ticks.Heck BCBS sits in a hot bed of ticks.This commercial is so dangerous,kids w/ headaches,never getting to the underlying cause.Maybe Lyme?

BCBS,sitting in the Research Triangle w/ Glaxo...uhhhhhhh!!!

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LYMESCIENCE
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How solid is that information regarding BCBS asking for money back, SOLID. I know personally three people to whom it has already happened.

The only reason they havn't completely done that to me is because I had tests which showed physical evidence beyond a reasonable doubt that I had Lyme encephalopathy at the time in question of the test, which also happened at the two month IV point, so they allowed another month. Anything beyond that point where I had EXTERNAL (meaning other than Jemsek) physically documented Lyme Encephalapathy by independent PET scan, they have forced me to pay, so I started paying out of pocket a while ago. Now, I can't even choose to pay out of pocket for the treatment I WANT. My civil rights have been violated.

Also, BCBS made a little compromise with me. Ok fine, ya got CNS lyme, we see the radiology report, so we will pay one more month, BUT, YOu foot the 3000 dollar PET Scan bill.

So, in the end, even stevens...

For those of us while physical documenation, even if its external, we still get screwed.

What do you think will happen to the majority of you guys out there who don't have a CDC positive, pictures of your bulleseye rash, independently interpreted quantitative PET scan, PCR positive through multiple labratories, picturs of ACA(unique to lyme) verified under microscopy -independently, and who actually have a treatment plan that you can predict with accuracy works week to week - I fit all those criteria, in addition to all the CDC survelliance case definition criteria - including a history of frank athritits, and they are SCREWING ME.

Since the level of evidence in my case is Highly UNUSUAL, and the vast majority of chronic Lymies don't have this kind of info. What do you think BCBS is gonna do to you, if they can do this to me, and I've got more than just my symptoms to back up the chronic lyme disease diagnosis.

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5dana8
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[Frown]

[ 21. July 2006, 10:44 PM: Message edited by: 5dana8 ]

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5dana8

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mimi
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OMG I have no idea if my tests will help me or not. I trusted Dr. J to interpret those they were greek to me. Pay them back how will I afford to do that [confused] I am barely surviving as it is. Please tell me this is a nightmare and we will wake up soon. Just got this picc and I have stressed and cried most of the time about insurance and now this. Pay [puke] them back How can they do that if they have already approved the service? This can't be real [bonk]
mimi

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LYMESCIENCE
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Listen, Jemsek didn't screw you. He is a generous and wonderful man.

You and I owe him much more than to try to pin circumstances which occur in life on a man who has put up everything to come to our rescue.

So, you may not have a postive CDC test, not many people do. This doesn't mean he incorrectly intrepeted your testing results, as he is an excellent physician with an extrodinairyly high level of intellectual honesty.

To his knowledge, your banding pattern was indicitive of Lyme, and you required treatment to get healthy.

How many physicans did you see before him that knew nothing of Lyme?

What has happend is that the rules were changed after the game has been started to allow the other team to win.

In this case, the rules were understood regarding Blue Cross, but, Blue Cross decided to change the rules mid way through the game and force the other team to suffer penalties that were not penalties when the game begain.

Remember that constitutional ammendment regarding this exact kind of thing?

Well, its rather simple to find, its clearly in the constitution. NO need to search through all the congressional statutes.

Now is the time to stick together. We must all be brave if we are to weather this storm.

Though the night be dark, the sunshine brings goosebumps the the skin.

Be brave, my fellow warriors, for when the sun rises and this night ends, we will strike.

(btw, I wasn'r referring to a literal night and a literal day, it was metaphorical)

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mimi
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Lymescience, Hold on I am by no means saying that

Dr. J or anyone else screwed me. I think the


world of him and everyone there. I was just

simply saying that you were able to help

yourself with BCBS because of your tests. I am

not as smart as some folks who can read their

results. No doubt I have lyme disease. I have

just as most of us supported him completely I

know what he has done for us all. I have


nothing but respect and admiration for him. I


have written letters and signed petitions just


like all of us have. We need to all work

together. Please do not read into what I said.

I just don't understand it all as well as I

would like that's all.

[group hug]
mimi

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Georgia Sue
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Hey guys, Maybe everyone should slow down and see what the Board ruling really means before we put a lot of information on this board that might come back to haunt Dr. J. He is my Doc, too, and I am mad as any of you at what has happened to him, but his own statement at the end of the Charlotte article should clue us in that he thinks he can still be our Doc. My understanding of the second opinion is that we must see another NC Dr. and have him tell us what almost all of us have heard before, "You don't really have Lyme disease since your "test" are not conclusive", and of course there really is not any Lyme in your area. Then he or she will suggest Prozac, but after that ridiculous visit we will have the choice of who we believe. The Charlotte article says "The patient would be free to decide which treatment to pursue." As I read this, if we don't fit the CDC etc. we must have a second opinion to consider. I talked to the office this afternoon and they do not know exactly what it all means either, but that is the way they think it might be. As far as the research part, they have been doing research with all the information they collect from all of us, and with some very good results. Now, just think, some one else is going to have to look at that information. I see this as a good thing, maybe this is just the spark we need to get someones attention. I don't know about you, but I have been in this battle for nine years, and I know getting stressed out is the very worst thing to bring on a flare. Dr. J would not want any of us to undermine the improvement we have had by his treatment. Just my humble opinion, of course, and I did not stay at the Holiday Inn last night.
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Georgia Sue
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Hey guys, Maybe everyone should slow down and see what the Board ruling really means before we put a lot of information on this board that might come back to haunt Dr. J. He is my Doc, too, and I am mad as any of you at what has happened to him, but his own statement at the end of the Charlotte article should clue us in that he thinks he can still be our Doc. My understanding of the second opinion is that we must see another NC Dr. and have him tell us what almost all of us have heard before, "You don't really have Lyme disease since your "test" are not conclusive", and of course there really is not any Lyme in your area. Then he or she will suggest Prozac, but after that ridiculous visit we will have the choice of who we believe. The Charlotte article says "The patient would be free to decide which treatment to pursue." As I read this, if we don't fit the CDC etc. we must have a second opinion to consider. I talked to the office this afternoon and they do not know exactly what it all means either, but that is the way they think it might be. As far as the research part, they have been doing research with all the information they collect from all of us, and with some very good results. Now, just think, some one else is going to have to look at that information. I see this as a good thing, maybe this is just the spark we need to get someones attention. I don't know about you, but I have been in this battle for nine years, and I know getting stressed out is the very worst thing to bring on a flare. Dr. J would not want any of us to undermine the improvement we have had by his treatment. Just my humble opinion, of course, and I did not stay at the Holiday Inn last night.
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LYMESCIENCE
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I see the point raised here, and I agree that he will be able to treat with that stipulation.

Here is the issue: What defines "research"

What happens to current patients? Are we grandfathered in so that we can remain on our current CHOICE so long as we sign a consent form?

Is the stipulation regarding a 60day max only applicable to future patients, or does it apply to all patients?

These are all very important questions. And while I do agree that caution is needed, we must examine the facts first.

What has "cool" heads, life happens done for the Lyme Community?

We get bullied around, and the people doing the bullying have no problem playing by those rules. We have simply told ourselves, Ok, no big deal, just another court case, lets just allow the legal system to work things out.

Clearly, this has not worked. Jemsek was convincted quite litterally in a kangeroo court with an incredibly weak legal argument, ect..

So, while I understand the appeal of quite restraint, such action has not proved fruitful in the history of Lyme Disease, or, frankly, any other conflict in the course of human history where similar events occured.

So, what happens to the opposing philosphy when the cooler heads concept is used in battle after battle..... well, it dissapears all together from history.

What happens is the people who have been fighting those who refuse to defend themselves eventually have no one to fight.

Then..... my friends, think of the future. While I do agree that its important to have a clear intrepetation of these stipulations for Jemsek, it is frighteningly clear that our strategy in this war must be changed. The key is knowing how to effectivly change our strategy in such a way as to make victory a highly likely event.

So, while I'm not advocating blowing up cars tomorrow, I am advocating a battle plan because peace talks have not worked.

That is not to say peace talks are useless, its to say that we have not had much success so far. It isn't to say this strategy shouldn't be continued, but rather we must diversify our resistance to include other forms of advocacy.

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researcher
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Those of you that was at the hearing yesterday, did anyone else notice the complaintants completing an expense sheet when we all first sat down. It sounded as if the attorney asked them if they had logged in their expenses. The three told him they did not stay the night. He then handed the one closest to the middle a form that looked somewhat like a mileage/expense report. She began to complete it. If they are getting reinbursed for expenses who is paying for this?

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Tania

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5dana8
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[Frown]

[ 21. July 2006, 10:43 PM: Message edited by: 5dana8 ]

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5dana8

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Aniek
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While a battle plan is important, it can't be created on this site. For one thing, the other side will read it.

I believe ConnieMc asked people to PM her with recommendations of concrete ideas. I hope people are doing that (and that Connie will tell us if she is getting way too many messages).

There does appear to be confusion over the CDC guidelines. The CDC diagnosis guidelines DO NOT require a positive test. There is flexibility in the guidelines for diagnosis based on symptoms.

For those who are wondering about the CDC guidelines, they can be accessed here:
http://www.cdc.gov/NCIDOD/DVBID/lyme/ld_humandisease_diagnosis.htm

You should note that it starts by saying:
"Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans."

--------------------
"When there is pain, there are no words." - Toni Morrison

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researcher
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Those of you whose medications are not being covered by insurance or you are having to pay out of pocket, there are some pharmacutical companys that will assist or get medication to you for free. I have already been researching this due to the latest happenings with BCBS. I am waiting any day for them to no longer cover the medications. There is a website from a non-profit agency who has a data base of the company's and medications. It is supported by grants and donations. The website is www.rxassist.org

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Tania

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lou
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I dunno about class action lawsuit, unless you get a famous attorney working pro bono.

Researcher, that was a very astute observation on your part. Pretty clear that the ins co was paying those people to testify against Dr. J.

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5dana8
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Lou

Is that legal? Can a lawyer pay someone to testify and now is their testomony still valid?

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5dana8

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8man12
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To me this all adds up to no good.It is serious or he wouldn't be in the postion he is.Lymies need to do something as i said.No-one takes us seriously,we just die off.
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Aniek
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quote:
Originally posted by 5dana8:
Lou

Is that legal? Can a lawyer pay someone to testify and now is their testomony still valid?

A medical hearing is different than a court of law. It may be governed by state regulations, and there may be state laws that apply, but what Dr. J faced was not a malpractice suit or other civil or criminal court case.

That said, at least in courts of law, witnesses are paid all the time. There are some restrictions, but in general witnesses can be compensated for their services.

--------------------
"When there is pain, there are no words." - Toni Morrison

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5dana8
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I still don't get it. How can the medical board believe paid witness's?

[confused]

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5dana8

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ConnieMc
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They are not being paid. But their expenses incurred to testify are reimbursed. Meals, lodging, travel. It was obvious to me that Heather Jenkins and a few others were called to the hearing because the board's attorney may have decided to question them again in front of the board.

What happened Thurs was not unlike a "sentencing hearing". Either side could have provided more testimony. My take, the board's atty wanted to wait to see what Dr. J's side had to offer to plead his case. Dr. J's attorney did not use any legal findings or alternate interpretation of the law. No case law rulings were presented. The board atty knew he had the upper hand so decided not to call witnesses. He simply quoted the law. That is it. I am sure under the circumstances the board would have been furious if their attorney had called witnesses. They had a long day of issues ahead of them and did not want to waste any time.

Hey, I know how important the LAW is. My father is an attorney and I deal with the LAW daily working with Social Security claimants. LAW is the bottom line in any case. And the board attorney knew the LAW was on his side.

This is my opinion and my opinion only. Others may not agree.

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ConnieMc
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One other point. I could only get in to see about 2/3 of the hearing in mid-June, and I certainly may have missed this, but I am curious whether there was clear evidence presented about the 2 existing standards of care. The fact that what Dr. J does is, in fact, included in structured guidelines for care developed by other physicians should have been strongly presented. That gives at least some validity to what he is doing. Otherwise, it looks like he is out there by himself trying all these things with patients.

Does anyone know if these issues were clearly brought out by Dr. J's attorney? Does anyone know if the board was given copies of these guidelines?

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5dana8
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Here's the 3 page results from the hearing. Don't know if you can find something in this that might help answer your question:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=044897

On page one-Char was there in the overflow crowd. You may want to pm her.

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5dana8

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Mo
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This one is the zinger:

* Treatment with antibiotics for longer than two months must be part of a research project approved by the board and monitored by appropriate authorities.

I was not aware that the board and other "appropriate authorities" had the qualifications, expertise, or justification to practice medicine in treating TBD's to efficacy.

I do hope they will have to sign on to have some accountability for all of the patient's health and welfare - if they are going to be "approving and monitoring" care.

I do hope they are sure to allow patients their civil right to the ILADS standard of care, and that they are going to become fully educated in it themselves.

[bonk]

Mo

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