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» LymeNet Flash » Questions and Discussion » Medical Questions » Dr. J- NC- My view and what do we do now?

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Author Topic: Dr. J- NC- My view and what do we do now?
Tincup
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It was so nice to see so many folks attend the hearing in support of Dr. J. I will treasure the time we spent together... always.

Please excuse my scattered thoughts and random writings below. VERY tired.. short on time.. and not much in the brain department.

NO DOUBT! Having all those people there at the hearing.. made a HUGE difference. I saw them all lined up.. for hours... with heavy rains coming down in buckets on top of them.. but they would not move. They would not go away.

As I watched, the umbrellas over their heads appeared to fuse together. These people were close in heart and spirit through the worst of the storms.. both the rain storms and the medical boards lightning and thunder.

But... They remained united to support our cause... and our LLMD. It was a wonderful site to see!

Since a few folks here already shared the nitty gritty details.. and did so well at it.. I will simply add a few things to consider and MY opinions.

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

The outcome.. in MY opinion.. sucked! My heart and spirit were broken... and I am still trying to deal with it all. There is now a new North Carolina "Trail of Tears". It runs north from Raleigh.... for hundreds of miles.

I know folks will disagree with me.. but that's ok. I know I am normally the "look at the good side of this" kind of person... BUT.. this wasn't good.

1. Our LLMD's should not even be brought up on charges related to .. or associated with the over diagnosing and over treating of Lyme disease. PERIOD!

2. The medical board can NOT tell me that each and every one of the individuals sitting there gave EVERY choice available to their patients when folks showed up for help at their door... EVERY TIME! There is NO WAY! But they used that kind of garbage and more to kick our doctors.. and got away with it. Not only in the hearing.. but in the press. BOGUS!

3. If you examine ANY doctors records or treatment protocols in the USA.. I am SURE you will find errors. No one is perfect... nor are they God. The problem is.. some folks in the medical profession THINK they are God.. and use their self appointed power for their own purposes. I say ENOUGH!

4. FALLING ASLEEP during the hearing is NOT excusable!!! And they went on to JUDGE our doctor? HELLO???

5. If you are thinking the medical board doctors "got an education" about Lyme, if nothing else...

Hog wash.

They KNOW this stuff... unless they are blind, deaf, and dumb and live on a tree stump out in the midddle of the Pacific Ocean. Don't let them fool you. They knew EXACTLY what they were doing.. and they still did what THEY wanted... right or wrong. The hearing was simply to pacify us and was carried out ONLY so they could kick us and our doctors hard, while still following their procedures.

6. The "sanctions" they will place on Dr. J... well... it won't be pretty. Not if it is anything like those placed on our other LLMD's.

A. They will be restrictive.

B. They will be very COSTLY for Dr. J to implement.

C. They will be VERY time consuming for him and his staff.

D. They will restrict care for not only HIS patients.. but for the rest of us... directly or indirectly.

E. It will make it easier for people like them to challenge YOUR LLMD and make YOUR LLMD their puppet. That makes me sick!

F. It will promote insurance companies theories of not needing long term treatment... and make it harder .. if not impossible.. to get YOUR bills paid.

G. It will be very stressful for Dr. J and his dedicated staff... and will be a constant reminder that someone (their peers) think their dedication and their life's work was below average, at best.

H. Damage his reputation and all the LLMD's reputations because of the actions and charges. It will give BUTT HEADS the ability to say.. "that doctor is NOT good" to more patients... causing more Lyme patients to become chronically ill and go untreated.

I. It will certainly turn potential and/or new LLMD's away for fear of having the same thing happen to them.

J. It will impead or stop our research progress.. and tie our hands... at a time we need to be actively looking for help for the folks who are losing their lives to this GARBAGE!

And that list above.. it is only a FEW of the bad things that will come about as a result of the hearing.

I am tired of it. Tired of it ALL!

We JUST want to be better. We need help.

WE are the ones who will lose in this war if we don't do something about it.

Now that I've totally depressed everyone.. time to go fix some ribs and squash!

[Big Grin]

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

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5dana8
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Tincup

Thank yo for sharing.

I happen to agree with everything you said. Although this seems to be running against the current right now.

I am not very articulate but you said everything I feel and then some.

Thanks for your insight.

The truth isn't always pretty.

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

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Tincup
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Since we were suppose to be at the hearing on Friday... but it changed...

I went Friday morning to the hearing again, anyway. Good thing.. because folks showed up not knowing it was over late the night before. I asked them to sign in to show their support... and to do what I was doing.

I asked the Medical Board to send me 120 copies of the Complaint Forms that patients complete when they have a problem with a doctor in North Carolina.

I also asked 50 more be sent to a Lyme disease support groups office (legal dept).. and 50 more to the NC Support Group for their use... in case folks were to contact them about how to file a complaint.

I also said folks may be contacting the Medical Board on an individual basis for complaint forms.. and...

I also purchased a CD from them with all of the NC doctors names and contact info on it.

My thought is...

If they will do this to our doctor.. a doctor who is doing his best to clean up the MESS that other doctors have been making.. and continue to make...

Then I think it is time to start complaining about the doctors who got us in this position to start with. I told them I would be contacting someone for legal help with this matter... and helping folks fill out the forms.

I will let you know more... as I know... after returning from Dr. J in CT's hearing.

Does anyone have any better or other ideas?

I'm all ears!

[Big Grin]

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

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Tincup
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Yo ho Dana..

You are absolutely right!

Ya know.. it is good to see someone else who is fed up with the whole thing! Thanks for replying. But also.. watch out for your head.. there MAY be some one jumping on it .. hehehe

Really.. it is good to see someone who doesn't want to pussy foot around any more... as more and more of our friends and families become worse off and our doctors are threatened and picked off one at a time.

We NEED to take a stand!

If we don't.. the garbage will just keep on coming.

As they say...

You've got to stand for something or you'll fall for anything!

I am looking for ideas and people who can make them happen!!

[group hug]

[ 19. June 2006, 05:40 PM: Message edited by: Tincup ]

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

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5dana8
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Thats a good idea Tin cup

letters I can write.

I say lets bombard them with letters.

Thanks for getting the contact forms,names and hopefully address's ect..

Now, how to circulate them?

Can you post some when you get them?

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

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lou
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I agree with this.

Think that complaining about docs in NC who do not diagnose or treat lyme should be an avalanche.

Think that the press covering the hearing,etc, should be approached to cover the ignorance of the state epidemiologist and the coverup of lyme in the state. This is just like the mad cow denial in Europe by health officials until the .....hit the fan. This is like the chinese officials who were covering up cases of bird flu or whatever it was. Health officials are supposed to be on the forefront, the early warning system, not bring up the rear, only helping in public health when forced to by the outraged citizens.

Think that people who are able to keep their tempers under control and write concisely, briefly should send a letter to the board. This should explain why the verdict against Dr. J went against their own law. The law specifically says the risk/benefits of experimental or non-traditional therapy must be considered. Patients should explain the risks they will face if their lyme treatment is curtailed. They should explain that changing the standard of care in 5 years is going to mean a lot more ruined lives and people in the cemetery early while we wait for the happy day. I personally would like to see a vigil at this building, with persons seated comfortably in a wheel chair, displaying a sign which assigns the blame for their inability to get treatment. This should be done after the July penalties are ordered, on the unlikely chance they might not be as restrictive as we think.

Just for starters.

Those people who are now going to drag their sick bodies to other places in the country for treatment should consider whether it is time to take a stand instead. Insist on being able to get adequate treatment with the doctor you already had treating you. Don't take no for an answer. We have got to stop letting them stomp us into the mud. Isn't your life worth fighting for?

[ 19. June 2006, 06:32 PM: Message edited by: lou ]

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LYMESCIENCE
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I agree that we have to fight, but I'm not as cynical as some. I do believe that several people came away from the hearing thinking that they learned about Lyme Disease.

I personally plan on being there at the next hearing in July.

I also agree with Lou that we need to be better activists. 5 years is far too long for us to wait. We need treatment now! The only thing that causes me to hesitate about that is that we need long term antibiotics, and until Fallon's study is published, we won't have the scientific backing that we will need to make a convincing argument.

In the meantime, we need to make sure that people in this state (NC) understand the risk they have of contracting Lyme Disease.

We will make this important because people, and our doctors have to know the risks. Our universities should be studying the transmition cycle in our state, and nothing is being done.

Well, I plan on helping to change that. But we must take things one step at a time. Step one is to get Jeff Engle fired. After that hurdle is over, then I think we can make longer term plans for NC.

But we must stick up for Jemsek come time for the July meeting at the Board.

They've pushed us, we should push back. Fall down 7 times, get up 8.

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lou
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Anyone who thinks lyme treatment will go on as usual at the Jemsek Clinic, with an informed consent document added, is kidding themselves. What the board decided is that they are not going to accept any other standard of care, and are going to violate their own law on experimental treatments.

The only reason his license was not revoked is because of those 1200 AIDS patients. As we know, when AIDS patients get dumped on, they fight back. They do not say, well it could have been worse. Lymies, on the other hand........
Gotta learn from the AIDS patients how to make things change.

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TerryK
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I agree with tincup's points.

I can't get treatment in my State, in part because a doctor who worked for Kaiser and had Lyme himself was hauled before the board and told that he either had to stop treating lyme or lose his license. He stopped and now no one will risk it. Apparently the past IDSA presidents from Oregon and Washington are both trying to stop patients from going to California to get treatment. It's outrageous!!

As mentioned before, I think the CDC is allowing the IDSA to set the standard because they promulgate the IDSA standards on their website and no other. This gives credibility to the IDSA and makes their guidelines the accepted standard. I think if the CDC at least gave links to the ILADS guidelines, which are now "official", this would allow more freedom for all States in determining appropriate diagnosis and treatment for lyme disease.

The other thing that is shockingly inaccurate is that the CDC state that current tests are quite accurate for late lyme disease.

Personally, I don't think it is the job of the CDC to dictate what treatment standards are acceptable but they are doing it and they are certainly doing a lot of damage to our cause.

I'll work on some kind of letter to them over the next few weeks and I hope others will write to them as well.
Terry

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lymemomtooo
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I agree, but be careful.
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islandgirl
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Tincup...you are a gem. An absolute gem.

(I started to call you Tini but edited when I realized that is the name of the antibiotic I'm on. But in some way it fits...a great cyst buster!)

I've read you from the beginning and received so much information...not just a one-line snippet, but a well-thought out response for each and every question.

How I missed you...now you are back for the important stuff. And again, you are right on target.

In Canada, we have very few LLMD doctors. My family MD is doing a super job, willing to oversee me as a patient under my LLMDs advice and prescriptions, but is aware to do more is to risk his practice. I think many concerned docs are in this boat.

So we rely on the few LLMDs that are caring for us all. (And our beloved west coast LLMD has already been through a medical review. He is being closely monitored... This man is a one man band, so willing to help us all... but is getting tired.)

I applaud you, Tini,and everyone else who work so hard, and who remain calm and articulate even in the face of rage.

This turned out to be a love message...sorry. I don't post much here but this thread got to me. [kiss]

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ellenluba
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So glad that more and more people are getting angry.

We can only do it with numbers. and there is no one to get the troops moving like Tincup.

What makes me FURIOUS is that our doctors are being targeted for these hearings in the first place. It's no coincidence that so many of our docs around the country have come under investigation by these boards.

We need to be able to fight more and that means staying focussed and working together.

That means that when there's a rally. like there was two weeks ago in CT, we need a lot more than 200 people to show up.

We gotta get sharper at recognizing attempts at sabotaging our organizing efforts.

I know that many people were dissuaded from attending that rally because there was a smear campaign that labeled it as being somehow controversial.

If you think any action is controversial don't just back away. Get the facts . Don't let yourself be manipulated by power struggles within the Lyme community.

In Ct. the same 51% of the evidence is needed to convict a doctor, same as in NC. Since medical boards tend to be very mainstream, they already start off hearing the evidence in a different way than a Lyme patient would.

So we really need to help Dr. Jones. I encourage every one of you to contribute to his defense fund ASAP.

If more money doesn't go in to the fund right away, he will not have legal representation to finish his case. As of now , there is only enough money in the fund to take him through Thursday's hearing - although two more hearings are scheduled.

That would be it for us. End of story.

Please donate right away and call friends and family to do the same www.DefendLymeDoctors.com

Don't procrastinate and say you're going to do it later. You have Lyme so you should know by now that you gotta do things as soon as you decide to.

The new IDSA guidelines are coming out soon.

I have the same sick feeling I had in my stomach the months before the Klempner study was scheduled to come out.

We need to start letter writing campaigns to the media ASAP to have some counteweight to news about the IDSA guidelines.

Look at this excellent suggestion about letter writing to Newsweek about their terrible article touting new IDSA guidelines: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=044842

We have a bill in Congress right now that wuold fund research in CHRONIC Lyme.

Call your legislators and ask them to sign on as a co-sponsor. www.Lymediseaseassociation.org.

Plans about how we're going to fight in the future are great. But please don't neglect these two things you can do right this minute.

Believe me, I have Lyme . I know the value of striking while MY iron is hot,because I never know when I'll be able to do something later on.

And watch Tincup. I have a feeling that a Tincup who's fed up will be an awesome force for change.
Ellen

--------------------


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Marnie
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I am AMAZED that NC follows "guidelines" from IDSA docs who are given huge sums of our tax money via OUR government to do piece-meal research to keep THEIR pockets full. In my opinion, North Carolina lawmakers have acted as "second opinion" doctors...determining what medical treatments one can/cannot receive.

Another freedom gone.

Here is a list of the IDSA doctors names and respective universities/other:


Gary P. Wormser,1 Robert B. Nadelman,1 Raymond J. Dattwyler,2 David T. Dennis,6 Eugene D. Shapiro,7 Allen C. Steere,9 Thomas J. Rush,5 Daniel W. Rahn,10 Patricia K. Coyle,3 David H. Persing,11 Durland Fish,8 and Benjamin J. Luft4

1Division of Infectious Diseases, Department of Medicine, New York Medical College, Valhalla, 2Division of Allergy, Immunology and Lyme Disease, Department of Medicine, 3Department of Neurology, and 4Department of Medicine, Health Sciences Center, State University of New York at Stony Brook, and 5private practice, Briarcliff Manor, New York; 6Division of Vector-Borne Infectious Diseases, National Center for Infectious Diseases, Centers for Disease Control and Prevention, Fort Collins, Colorado; Departments of 7Pediatrics and 8Epidemiology and Public Health, Yale University School of Medicine, New Haven, Connecticut; 9Tufts University School of Medicine, New England Medical Center, Boston, Massachusetts; 10Office of Medical Management, Medical College of Georgia, Augusta; and 11Diagnostics Development, Corixa Corporation, and Infectious Disease Research Institute, Seattle Life Sciences Center, Seattle, Washington

http://www.journals.uchicago.edu/CID/journal/issues/v31nS1/000342/000342.html


Isn't Duke Hospital, in North Carolina supposed to be one of the BEST research hospitals in our country?

Don't the doctors THERE know ANYTHING about a pathogen that also follows the glycolysis and cholesterol pathways...esp. given the recent news that prostate CANCER follows these pathways? And breast cancer...estrogen dependent...estrogen comes from cholesterol!

Gimme a break. We are not stupid. Cancer (DNA damage, acidic environment) happens because some pathogen is following the glycolysis AND cholesterol pathways and ultimately does DNA damage.

I thought Duke was a leading CANCER hospital.

Why did the truth about magnesium deficiency in lyme disease come from a ROMANIAN CANCER HOSPITAL and why did "Magnesium for autoimmune" - a U.S. Patent - also come from a CANCER HOSPITAL IN ITALY ? Why aren't these medical abstracts on OUR pubmed? Who are we protecting and why?

The CDC does NOT issue "guidelines". They are very careful about using that word. Although it is interesting to note that one doctor above is also on the CDC staff.

Infectious disease doctors...so far they haven't come up with anything to cure AIDS...after how many years? Forget the creed ("First Do No Harm")...it's greed.

And...not to mention that the "guidelines" by the IDSA are SIX YEARS OLD! They were issued in the year 2000.

Genetic research has come a LONG way these past 6 years in identifying what this pathogen is doing...what it needs...what it takes from us.

If you think for a second, our government doesn't know what is going on, ask yourself WHY this is so:

http://patft.uspto.gov/netacgi/nph-Parser?u=%2Fnetahtml%2Fsrchnum.htm&Sect1=
PTO1&Sect2=HITOFF&p=1&r
=1&l=50&f=G&d=PALL&s1
=5656037.PN.&OS=PN/5656037&RS
=PN/5656037

(I had to "wrap" the above link. It is U.S. patent # 5,656,037)

Am I mad? Oh, you have no idea!

BTW...as far as accuracy of testing goes...the test measures HEALTHY antibodies. What happens if many of them are damaged?

Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy.

The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but

is dependent on the presence of Ca2+ and Mg2+.

Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations restored the bactericidal effects of Fab-CB2.

The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction.

PMID: 9125579

A ``novel form of antibody-organism interaction?'' I don't THINK so!

"E. Required by immunological process. Magnesium, immunity, and allergy: Mg is required for several steps of immunological reactions
1. Lymphoblastic transformation, a prerequisite of secretion of antibodies by lymphoblasts, requires Ca2+ and Mg2+
2. Mg is required for synthesis of proteins, immunoglobulins included
3. Antibody-induced complement activation is Mg dependent
4. The antigen-immunoglobulin-complement reaction induces degranulation of the mastocyte"

http://www.mdschoice.com/elements/elements/major_minerals/magnesium.htm


No wonder the Wright Bros. built the first airplane in NC...they were trying to flee the state!

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5dana8
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Thankyou marine

For posting the names and address!

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

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TerryK
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Marnie wrote:
The CDC does NOT issue "guidelines". They are very careful about using that word. Although it is interesting to note that one doctor above is also on the CDC staff.

They may say that they don't but a brief look at their website makes it clear that is their intent. IDSA guidelines are prominant but no other guidelines are offered. If you follow the links on the left side you will also note that any information offered follows IDSA rhetoric with absolutely no hint that there is even another side to the story.

Information in the "resources" link is all slanted towards the IDSA model and they even include the "Innaccurate Information About Lyme Disease on the Internet" link.
http://www.cdc.gov/ncidod/dvbid/lyme/ld_resources.htm

Very upsetting and I think the main reason that many think that the IDSA are the standard because in essence they *are* according to the CDC website.

I didn't notice that one of the main opposing doctor's was on the CDC staff so thanks for pointing that out.

Yes, I'm convinced that there are many cancers that are caused by pathogens. Also that our government and the AMA have actively suppressed information about cures. Ever heard of the congressional hearings regarding hoxsey?? That crap is still going on and that was over 50 years ago.
Terry

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Tincup
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[Eek!]

I was delayed in responding due to storms coming through last night.. sorry.

I am overwhelmed by the number of well thought out and intelligent responses above. It appears I am not the only one who has had enough of this GARBAGE from the IDSA ducks. Thank you for sharing your thoughts... I REALLY wanted to hear them.

I have been in VERY deep thought lately about what to do to improve our situation.

I do like the idea of reporting doctors to their state medical boards for the missed diagnosis.. and/or improperly treated Lyme AND coinfection situation we have faced over the years.

We have been in the hot seat for TOO LONG! It's time to take a stand and reverse the tides so they compliment OUR direction.. not try to drown us in the surf.

Make the ducks take notice of what will happen if they keep this up!

But we MUST be united in the effort.

I am going to post another topic... and will be back.

Again, thank you for sharing your thoughts and info. It has MY brain clicking!!!

[Big Grin]

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

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Bill ATL
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Is this decision going to give the Insurance companies the "out" to drop Dr. J as a provider?

--------------------
Bill

**Question everything...it may save your life!!!**

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TerryK
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Since most medical boards seem to follow the CDC and IDSA info, do you think they will pay any attention to a patient who complains that a doctor did not diagnose them with lyme disease when said patient does not meet the criteria set out by the IDSA and CDC?

According to info on the CDC website, late stage lyme is easy to diagnose with currently recommended testing. Namely ELISA and Western Blot.

How many here have CDC positive WB tests and have been to a duck who said they didn't have lyme?
Terry

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bettyg
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breaking this up to help my/others lyme brains....

Quoting Marnie,

"Here is a list of the IDSA doctors names and respective universities/other:


Gary P. Wormser,1
Robert B. Nadelman,1

Raymond J. Dattwyler,2

David T. Dennis,6

Eugene D. Shapiro,7

Allen C. Steere,9

Thomas J. Rush,5

Daniel W. Rahn,10

Patricia K. Coyle,3

David H. Persing,11

Durland Fish,8

and Benjamin J. Luft4

1
Division of Infectious Diseases,
Department of Medicine,
New York Medical College,
Valhalla,

2
Division of Allergy,
Immunology and Lyme Disease,
Department of Medicine,

3 Department of Neurology, and

4
Department of Medicine,
Health Sciences Center,
State University of New York at Stony Brook, and

5
private practice, Briarcliff Manor, New York;

6
Division of Vector-Borne Infectious Diseases, National Center for Infectious Diseases,
Centers for Disease Control and Prevention,
Fort Collins, Colorado;

7
Departments of Pediatrics and

8
Epidemiology and Public Health,
Yale University School of Medicine,
New Haven, Connecticut;

9
Tufts University School of Medicine,
New England Medical Center,
Boston, Massachusetts;

10
Office of Medical Management,
Medical College of Georgia, Augusta; and

11
Diagnostics Development, Corixa Corporation, and Infectious Disease Research "

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Tincup
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Bill..

I believe we already have a problem there. BIG time.

[Frown]

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

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NP40
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This is where playing nice gets you. I have no doubt folks will play nice at the hearing in July and watch Jemsek get hammered.

If the AIDS movement taught us anything it's "the squeeky wheel always gets the grease."

Every single lyme and AIDS patient that Dr. Jemsek treats should call any doctor involved with this hearing and demand an appointment. Whether the doctor testified or sat on the medical board. ALL of Dr. Jemsek's patients should call these quacks and demand an appointment with these guys immediately!

Tell them that now they've ruled that Dr. Jemsek is not adequate to treat them any longer, that you suspect the doctor's on the medical board to be the "real" experts and demand an appointment to be treated by them. Remind them that you were improving under Jemsek's care and expect continued improvement under their "expertise."

I'd like to see a couple of thousand phone calls coming into these quacks offices in two days, demanding an appointment and why !

Next, write periodic "Letters to the Editor" of your local paper stating that lyme is misdiagnosed and inadequately treated. You need to plant this in people's consciousness. I'd also put in how CFS, Fibro, lupus, MS, ALS, Lou Gehrig's, etc. is often misdiagnosed when in reality it's lyme. You know how many people with these diagnoses will read your letter and then start questioning their doctor's ?

Create a s**t storm. Many of these people will read your letter and try contacting you for help. Make sure to include how high the incidence of lyme is in your area and the horrific symptoms one can develop. No one cares if it only causes a little joint pain and is easily cured with a couple of weeks of abx.

When newbies post on this board or any other board for that matter, and they live in your area, invite them to join your support group ! They need the guidance from the ole" timers and help swell our numbers for activism.

ALL, I repeat ALL support groups nationwide need to come under ONE banner when the need arises. If we speak with ONE voice to pass legislation, protect doctor's, etc., they have no choice but to listen.

The major reason our dcotor's will continue to get harassed, we'll be denied adequate treatment is that the other side experiences absolutely NO consequence at all for their actions. NONE, ZIPPO, NADA !

Bring up Jemsek and Jones on bogus charges. Big deal. If it goes the opposing camp's way, that's great, if not, no big deal, we'll get them next time. The NC support group is on the right track getting the state epidemiologist fired for his incompetence. He deserves to be fired.

Doctor's that don't treat adequately need to have complaints filed against them. I don't care if those complaints ever see the light of a med board hearing. They still have to be dealt with as does any citizen complaint. The doctor has to answer to it.

It gives you the patient, the opportunity to present evidence to the med board that your state's lyme treatment guidelines are outdated while you generously offer your eveidence of long-term efficacy.

Don't get me started, there's a h**l of a lot more I'll come up with. [Big Grin]

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lou
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This is being billed as a victory for our side.

I wonder what defeat would look like.

Somebody needs to rethink this situation and come up with a strategy to fight back or no one in North Carolina will be able to get more than IDSA recommends for treatment. If you have already had your 3 weeks, forget it.

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ConnieMc
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"Anyone who thinks lyme treatment will go on as usual at the Jemsek Clinic, with an informed consent document added, is kidding themselves. What the board decided is that they are not going to accept any other standard of care, and are going to violate their own law on experimental treatments.

The only reason his license was not revoked is because of those 1200 AIDS patients. As we know, when AIDS patients get dumped on, they fight back. They do not say, well it could have been worse. Lymies, on the other hand........
Gotta learn from the AIDS patients how to make things change."

I agree with this. AIDS/HIV opens doors and I thought all along that Dr. J would not lose his license because of them.

My fear is that at the meeting Dr. J will have with these clowns in July, they will force him to use what they consider to be the accepted standard of care. If this is the case, we will lose Dr. J, bottom line. He has a lot at stake. The financial burden of a new clinic, 1200 AIDS patients, an excellent national reputation, and many other things. If he does not jump through the "hoops" these clowns set, then he will go down, plain and simple. Hopefully he has the right to negotiate some of these points prior to the big meeting, but I do not know that to be the case.

They announced their decision of license revocation with a stay and continued this to a meeting in July. That was for a reason. So they would not have to discuss the new parameters under which he can practice in public view.

If I can find out when this meeting is, I want to be there. Sad thing is whatever happens, they already have their mind made up.

I have contacted Beth Jordan, NCLDF founder, to discuss some of the ideas on this board. I believe the membership of the NCLDF has to have an organized response to all that has happened.

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lymesux
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Thanks for bringing this up TC.

This whole thing sickens me more than i can say as Dr. jemsek has saved my family's lives. I have temporarily relocated as of this week to NC to be treated by Dr. J for my terrible lyme and coinfections and know now that that treatment probably will not be what I was expecting.

I am horrified that half or more of the doctors that i've seen in the past have their licenses w/o problem after how they treated myself and my kids w/this going on.

i will do what everyone else thinks is right.

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NP40
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I'm tellin' ya', call these quacks on the medical board and demand an appointment with them. If they refuse an appointment for the hundreds or thousands of calls that come in, then stand out front of their offices with signs that say "Doctor __So and So_____ is letting us die !"

Get a little media attention, assail their reputations. Give them the "pucker" factor, making them squirm in their seats and Ivory Towers. What's good for the goose is good for the gander. I'll bet they never pull this crap again and will leave Jemsek the h**l alone.

They can't afford the bad press that hundreds of ill people will be left in the lurch without Jemsek. You let these guys sit in anonymity behind closed doors and decide Jemsek's fate and adequate treatment in NC is gone.

When you shine a light on roaches they scamper for the hinterlands.

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Mo
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I say fry the [email protected][email protected]

[woohoo]

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Michelle M
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Tincup, I agree.

I'm really mad too, and frustrated.

Reading this thread leads me to a thought.

There are probably a couple hundred regular posters on here. Probably even more lurkers who don't post but read.

Each of us has been misdiagnosed repeatedly by idiots. (a/k/a "doctors" -- the same doctors who would purport to judge our LLMD's.)

Why don't we all pick the most outrageous offenders and file complaints in our respective states with the medical board?

We could cite to our own misdiagnosis by Dr. X, why he SHOULD have known we had lyme but refused to test or treat, threw us out, gave us anti-depressants, or whatever. And then at the end add in a paragraph that mentions the current prosecutions of our two doctors J.

Many complaints of ineptitude over many states might get someone's attention. It might even get some press if many did it. We have all had a tendency to "let it go" and go on with our LLMD treatment, never looking back at these energy-sucking a$$wipes. But maybe it's time we got a little ugly.

I'm willing.

Michelle

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lymemomtooo
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Michelle, Just my thought here...It might be better to not muddy the waters with the situation about the Dr.J's. It may look like someone was only doing this for retaliation for what is happening to them.

And we all know that really isn't the reason..It has been something that all of us have comtemplated many times over but the spark may have just been touched off.

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ksparks
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Some fuel for the fire:

I have NC Blue Cross/Blue Shield and I see Dr. J in NC. Since I started IV antibiotics they have been temporarily rejecting my claims, stating they were requesting more info. Now all of a sudden, since the medical board made its decision, I am receiving denials for all of my IV care- from day one. They are saying it was not medically necessary.

That means that Dr. J's clinic has not been getting paid for a while now from BCBS- even for what they expected and he is in their network. Sad how they have a hand in how medical treatment is rendered in this country.

Also, someone mentioned Duke University and how they should have a better handle on all of this. I saw the leading "tick bourne illness" gus at Duke- Dan Sexton. He is very vocal about the fact that we do not have Lyme disease in NC and will not see Lyme patients. I had to be a thorn in his side to get in, and now regret it. He said I was making all of my symptoms up- yada, yada, yada.

The UNC ID clinic was a little better, but not much.

I heard from a UNC PhD who is now a med student that recently they have found and isolated a new strain on borrelia in ticks from the ENO river area in NC. I don't think they have published yet and I don't know much more about it, but I will work on finding out which lab is doing the research and who the PI is. I am a UNC grad student so I should be able to get in to talk to them.

Kristen

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researcher
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Connie or Tincup (or anyone who may know),

If Dr. J's treatment modality is suspended by the medical board and we are not allowed our meds and get sick, can we sue the medical board?

Can the medical board be sued or are they protected from legal action holding them liable for there decision? Anyone have an answer?

Tania

[ 21. June 2006, 04:01 PM: Message edited by: researcher ]

--------------------
Tania

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ConnieMc
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quote:
Originally posted by ksparks:


I have NC Blue Cross/Blue Shield and I see Dr. J in NC. Since I started IV antibiotics they have been temporarily rejecting my claims, stating they were requesting more info. Now all of a sudden, since the medical board made its decision, I am receiving denials for all of my IV care- from day one. They are saying it was not medically necessary.

That means that Dr. J's clinic has not been getting paid for a while now from BCBS- even for what they expected and he is in their network. Sad how they have a hand in how medical treatment is rendered in this country.


Kristen, I also have BCBS but it is the state employee's plan. Same rules I would guess. I am not on IV (that ended a long time ago and they paid for it) and am on maintenance therapy. I visit the clinic every 3 months for followup.

My last appointment was in March and BCBS has yet to pay for it. I received an EOB stating that they were requesting more info. I had no labs at that visit and it was not a complicated visit.

So seems like they are now rejecting EVERYTHING from Dr. J's office. Even appointments.

I cannot for the life of me figure out how they can get away with this. He is in network and I only go every 3 months.

Will be interesting to see what happens.

Money is the bottom line, folks. Sure the insurance companies wined and dined the medical board to steer them their way. Criminal.

Tania, I have no answer for your question. To gain attention, if we had a willing attorney we could file a class action suit. But I have no idea where the law stands on this.

Those denied IV should try to get together to file a class action suit.

I am so pi**ed about the happenings of the past week. I think all care will now be limited. All of it.

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3greatkids
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First of all,what a day for that hearing.
Standing out in the flooding rain,yes it was BAD.

If that was not a statement in itself,standing in that horrible mess,well,those pompous idiots on the board... [cussing]

Add me to the BCBS situation.My last two visits have not been cleared.Gosh,we pay enough for that coverage.

I think the governor will have to have another ear full about this.Didn't his office allot some funds for education Connie?It is scary to think about all of the folks that will have coverage denied.

How can they not follow thru for care?
This entire mess is like a can of worms,no one wants to face it,passing the buck.

If people sick w/ this horrible disease could stand in a line,have buckets of rain pour and pour and pour all over them...then the members of the med. board should have stayed awake and listened the entire time. How RUDE.Grounds for a Mishearing!


I think a rally on the capitol is a must.The NC Lawmakers need a showing and a statement too.

It's Hurricane season, storm brewing.I ain't talking Hockey.

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ConnieMc
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quote:
Originally posted by 3greatkids:
First of all,what a day for that hearing.
Standing out in the flooding rain,yes it was BAD.

If that was not a statement in itself,standing in that horrible mess,well,those pompous idiots on the board... [cussing]

Add me to the BCBS situation.My last two visits have not been cleared.Gosh,we pay enough for that coverage.

I think the governor will have to have another ear full about this.Didn't his office allot some funds for education Connie?It is scary to think about all of the folks that will have coverage denied.

How can they not follow thru for care?
This entire mess is like a can of worms,no one wants to face it,passing the buck.

If people sick w/ this horrible disease could stand in a line,have buckets of rain pour and pour and pour all over them...then the members of the med. board should have stayed awake and listened the entire time. How RUDE.Grounds for a Mishearing!


I think a rally on the capitol is a must.The NC Lawmakers need a showing and a statement too.

It's Hurricane season, storm brewing.I ain't talking Hockey.

Yep, I got sopping wet and stayed that way much of the first day. But it didn't matter. Whatever it takes, nothing would drag me away..

I have yet another appt coming up at the clinic the first week in July. Think I will call BCBS to see what they are doing with my March visit.

3greatkids ... how 'bout those 'canes! What a game. Imagine that. The Stanley Cup in NC.

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lymemomtooo
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up
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3greatkids
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I know this entire situation has been bad.

The one thing I have noticed about the entire thing....people have really taken notice!!

People that I know,friend of a friend,yes these would be the ones that wrote me off and thought I have been [loco] .Well,they are scared.

These people have been asking hard core questions about Lyme.Many understand how close it is to them and how they could very easily become victims.

I don't know about you,but I have seen this disease take a front and center seat in my town.
I suppose after standing by and watching my family struggle,hummmm,maybe it is for real!!!

I think the quilt is eating at them HA!!!Quilty for brushing us aside.

We need to rally rally rally and then some.
Go to the state Capitols,rally rally,go w/ crutches, wheelchairs.Whatever it takes.

The time is ripe for further education.

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lou
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Think you are right, 3 greatkids. Had previously been concerned that kicking up a fuss before the penalties meeting would make them mad and worsen the situation. But I think the die is already cast and if patients don't hollar loud to their legislators, it might become unchangeable. Better to set the change in motion before it is made public.

This was a political action against the doctor, and politics are needed to counter it. Legislators can and do intervene when state employees get out of line. Seems to me the pressure ought to be put on the head of the health dept.

Hope someone is getting ready to organize a big call/visit campaign to legislators.

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FightFireWithWater
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Up for H....C....Dave, who asked what had happened.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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