ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
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?
Posts: 2276 | From NC | Registered: Oct 2000
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
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.
Posts: 2276 | From NC | Registered: Oct 2000
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
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.
Posts: 2276 | From NC | Registered: Oct 2000
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
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!!!
Posts: 1076 | Registered: Apr 2003
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posted
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.
Posts: 559 | From Cary, NC | Registered: May 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
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 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 them back How can they do that if they have already approved the service? This can't be real mimi
Posts: 343 | From usa | Registered: Dec 2004
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posted
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)
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
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.
Posts: 11 | From screven, GA US | Registered: Dec 2004
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posted
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.
Posts: 11 | From screven, GA US | Registered: Dec 2004
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posted
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.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
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?
-------------------- Tania Posts: 13 | From Charlotte NC | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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.
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 Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
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
-------------------- Tania Posts: 13 | From Charlotte NC | Registered: Jan 2006
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Lou
Is that legal? Can a lawyer pay someone to testify and now is their testomony still valid?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
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.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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 Posts: 4711 | From Washington, DC | Registered: Mar 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I still don't get it. How can the medical board believe paid witness's?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
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.
Posts: 2276 | From NC | Registered: Oct 2000
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
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?
Posts: 2276 | From NC | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
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:
* 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.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
Sure is frustrating reading all the stuff the LAW has going on for it, isn't it?
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posted
Perhaps we need to get a private and moderated yahoo email list to communicate about lyme patient strategy for the south.
And/ or all of us NC (and surrounding) lymies need to get together in person to put our heads together.
Obviously let's clarify if, indeed, Dr. J is not allowed to treat us for longer than 2 months - even if we pay for it out of our own pocket! That is outrageous if that is what the NC Med Board has actually proposed.
And yes, if that is what they propose, then it would seem that our rights are infringed upon and we should look into a class action lawsuit against the NC Board.
Posts: 211 | From NC | Registered: Dec 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Daisy
Can you PM me your LLMD's number? We are up a creek in "Doctor Seeking Section" as to who to advise people to go see who need longer than 2 months of treament in the southeast area.
We do need a second opion here if the results of the verdict are correct.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Mtnwoman
I am up for us to either all get togeather via the internet for people that can't travel very far or via e-mails. Anyway we can get togeather and share our ideas on how to proceed would be very helpful.
If we have any recourse to fight it is really important to that we stick togeather.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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It seems to me that there is more than enough ambiguity and confusion in both the law and the ruling to allow plenty of room for manuver. The point is at this point not to be discussing all of this on lymenet. From now on the motto must be "Loose lips sink ships". Persons interested in communicating with me on these subjects may do so via private e mails.
I would remind you that even a cornered rabbit will turn and bite. Cheers.
I am not a rabbit and neither are you.
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Can someone give us an update as to what has gone on this past couple weeks with the Dr. J situation?
posted
I'm interested too. Is there anything we should be doing right now to help Dr. J out? My mother (Dr. J patient) is very anxious with this whole turnout. Christina
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I have had numerous communications with Dr. J. The board has not sent their final sanctions. There are negotiations going on behind the scenes, however, not particularly fruitful from what I have heard. Dr. J, etc are waiting for the final ruling to come down before communicating any further.
One thing he does want done by anyone in NC .... write the Attorney General's office at the address below and complain about any insurance issues you have. Also, if you are concerned that your medical care is being taken away, please contact them as well. Insurance companies are practicing medicine and taking the road which costs them the least money. I made lots of headway with the AG's office and they need to hear from anyone in NC who has concerns about what has happened. Here is the contact info:
Sterling M. Fulton-Smith, MHA Office of the Attorney General Consumer Protection Division Managed Care Patient Assistance Program 9001 Mail Service Center Raleigh, NC 27699-9001 In State Toll Free: 866-867-6272 or 919-733-6272 Fax: 919-733-6276 Email: [email protected] Website: www.nchealthconsumer.org
Please, NC residents only. They will not investigate complaints from people outside the state. And we do not want to tie their office up with letters which will not make a difference.
Thanks all....
Thomas Parkman, if you are reading this, consider making a contact in SC with the AG's office. I would imagine SC has a managed care patient assistance program as well. Rally your membership down there to voice your complaints.
Posts: 2276 | From NC | Registered: Oct 2000
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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]](graemlins/puke.gif)
them back How can they do that if they have already approved the service? This can't be real ![[bonk]](graemlins/bonk.gif)
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