Tuesday, February 3, 2009

The fight about Lyme

As readers know, many physicians have been targeted by state Medical Boards for treating Lyme disease based on ILADS guidelines. The process generally has occurred because well meaning IDSA doctors have felt that the treatment rendered by such physicians has been incorrect or possibly dangerous to patients. I believe that players on both sides, the IDSA and ILADS, for the most part are sincere in their beliefs. This is a war of ideas.

Unfortunately, it is also a war about patient care. Physicians who treat chronic Lyme disease based on the ILADS paradigm, and their patients, are convinced that such treatments are correct and have been extremely helpful, and at times life saving.

Many ILADS physicians have the sense that Ivory Tower physicians, who follow the IDSA are not experienced in the treatment of patients suffering with the ravages of chronic Lyme disease. Infectious disease physicians are a relatively small group and are for the most part hospital based. They don't see the flow of patients with vague complaints such as fatigue, joint pain and brain fog that frequent primary care offices. LLMDS have learned that many such patients and others are suffering with chronic Lyme disease. Infectious disease physicians are charged with the management of hundreds of infectious illnesses. It makes sense that they would follow guidelines created by members of their professional society. Medical Boards are charged with the responsibility of investigating all complaints lodged against physicians. Typically, they defer to peer review- the opinions of experts. These peer reviewers have generally been unaware of the ILADS guidelines and or not given them much credence. It is this cascade of circumstance which leads to Medical Board charges against LLMDS. We have seen this scenario played out in many states with many doctors.

The cost of litigation is extremely high. Because of this, physicians at times have
required financial assistance from the patients they treat and other members of the Lyme community.

I believe that ultimately reform must occur at a fundamental level,t through changes in state laws, to protect ILADS physicians and the patients they care for. These battles must be fought on a state by state basis. I hope this blog has been informative and I thank you for your support.

42 comments:

bitten said...

I just can't believe this is happening. I will call or send letters or do whatever you need to help.

Use me as a case. Give them my file. You have no choice but to treat me with antibiotics given test results. OMG I can't believe this is true. Come on patients/readers lets help.

lymefighter30 said...
This comment has been removed by the author.
bitten said...

Please keep the blog information. I know how you can make the money you will need for this fight. I'm sure.

Jennifer said...

This makes me so angry.

You're NOT my doctor, but I am always fearful it will happen to my doctor. Makes the pit in my stomach get bigger and the nausea more severe.

Keep fighting the good fight.

Lori said...

Your blog and invaluable experience gives us all hope that we will get better!
EVERYONE needs to forward your post so that you will get the support you so rightly deserve.
You are appreciated more than you will ever know!!
From NY to CA we need your LYME MD BLOG, and your patients need you so that they will finally begin to live again!
I have been treated with antibiotics for the past six months, without the treatment, my symptoms would have NEVER improved!!
They cannot continue to sanction responsible, ethical MD's who are desperately trying to help Lyme patients!
Thank you for EVERYTHING you have done.....now it is your readers/patients turn to do EVERYTHING they can to help you!!

Staris said...

This is crushing news. You go above and beyond for your patients - we truly appreciate everything you have done.

There are TWO standards of care - and one is being investigated for significant conflicts of interest.

Of course as a patient I am mortified. Maybe I can find another LLMD but thats not the point (although they will continue to become more scarce at this pace). You pracitced sound medicine - people got better. That should be the end of the story but unfortunately it is not.

We will contact people as requested. We will do whatever we can. Please keep us updated if possible. Good luck!

lymie said...

This has got to be stopped by political means before it gets to the point of hearings or charges, because that will mean big bucks for defense.

Malpractice insurance does not cover this kind of thing, so a doctor who is charged by the medical board has to pay for his own defense, and ask for help from supporters. Dr. Burrascano had to do this, and Dr. Jones has been forced into this position for more than a year, with multiple trumped up cases.

It doesn't matter who your doctor is, he or she will be affected by cases such as this.

We need an organized and overwhelming response to this witchhunt.

Unfortunately, Montgomery Co is represented by a woman who had gone out of her way to hurt lymies, so this doctor's representative will not help him. That leaves all of the others to work on, and the governor, etc.

Jennifer said...

http://jmgarnet76.blogspot.com/2009/02/so-angry.html

Anyone want to come and comment .. please feel free. I wrote a doozy of a blog about LLMD's under seige!

Makes me SO ANGRY!

Starlings Preschool said...

Lyme MD -- I am so sorry to hear this and will do my part. How about moving to NY or CA where you are protected, and where you are needed? ;)

TAK said...

This is horrible news. I will write and call.

It is outrageous that a doctor who sits by and does nothing to help would try to stop others from helping.

Use some of the data in "Cure Unknown" to defend yourself. As you no doubt know, the book was written by a senior editor of Discover magazine.

Reading the science and history of lyme disease is a jaw dropper and I've no doubt there is info in there that could be used to help your cause.

We are behind you doc!!

MoreOrLesMe said...

This is distressing news to me personally as my pain level this year has been better than it has been in 20 years. I was going to have to quit work due to the pain and brain fog I just couldn’t do it anymore. I hope we can find some way to get these XXX off your back. Is it OK to identify you or just LLMD who prescribe long term antibiotics for Lyme disease?

Labmom said...

I sent an email to your senator. I do not live in your state but I thought I would share my story with him. I live with chronic Lyme and I have the most wonderful LLMD in the world. He has helped me so much and I am getting better. It is sad that people have to suffer so much with this disease. Do you think the head of the IDSA or CDC would take my blood if they needed it? I doubt it. Yet because I only had 4 bands positive on my WB, I am technically negative so I can go to the Red Cross and donate blood tomorrow. Pretty scary if you ask me. If these docs who don't believe in chronic Lyme would just listen. Maybe someday everyone will be on the same page and then we will have the chance to really fight this monster. I wish you the best and have really enjoyed your posts. I hope my letter was a bit of help for you. Thank you for fighting for us.

Lyme report: Montgomery County, MD said...

It is not a debate about two standards of care. That is a smoke screen. It is about whether the earth is flat or round.

The side that would believe that Columbus would sail off the edge of the world is winning.

Robert said...

It seems a bit odd contacting people for help when most of us don't even know your name, myself included. It may help your case if when we contact people we could specifically say who we are talking about.

Or perhaps that is a really bad idea as it might bring even more attention to you specifically, I don't know. Many people on other Lyme forums are holding back from stating who you are as we normally do, since we don't want to end up starting these LLMD witch hunts.

Perhaps your lawyer could help out with this question?

Jane said...

Robert has a good point--but Not only your name ( which btw I do happen to know) but for people to be taken seriously if they do support you; they really have to know the specific charges. And the specific instances.

In another case, against Dr Jones, those of us who supported him knew that the charges included prescribing medication by phone before having seen/examined a child. we then could decide if for us that was acceptable under which circumstance and react accordingly.

We do not know the charges against you Dr - LymeMD-nor do we know the circumstances and yet you are asking us to support you with vague letters??

and the fact they took ( so far) 5 case records shows it may not be a single simple charge.

I for one cant assume this is a simple case of Lyme persecution until I know the details.

There were a few Drs in the NY-NJ-Pa area the were charged--and deservedly so--for prescribing things like injected bismuth etc that ended up killing Lyme pts--and for other treatments that harmed as well.

Im NOT presuming to say what LymeMd did was wrong--only that it would be fair for him to give far more details before pleading for help.

Donk said...

I'm sorry to hear this and it makes me mad. I will definitely be writing to every MD politician that I know of. For whatever it's worth - you can know that there are many, many Lyme patients that fully support you.
Hang in there. Please.

lymie said...

What does your lawyer say about contacting the legislature, etc? This is something that you and he would have to discuss.

How do you feel about being outted, with your name used on internet forums? That is going to happen if people start acting on your suggestions.

Also, have you contacted any of the lyme support group leaders/activists in the state? That should be your first stop as they will have a lot of background information that could be crucial in any campaign, plus ideas on timing.

I don't think a plea on a blog is the way a good campaign will be organized. And saying anymore on a public blog is probably not advisable. All kinds of people are reading this.

Ben said...

I'll do what I can. I think it is advisable, as an additional measure, to take this case to the newsmedia. (Unless a patient persuades the ACLU to take it pro bono) if you take a case to court you lose even if you win (as litigation is so expensive). Can someone post the name and address of the editor of the major Maryland newspaper? Do some patients know investigative reporters or media personalities?
May we identify LymeMD by name?

Lori said...

I emailed Marc Silverstein of ON YOUR MARC MEDIA, who resides in Maryland and is the PR Contact for the documentary UNDER OUR SKIN. I also emailed Brooke Landau (Lyme Spokesperson and San Diego newscaster) she will be on NBC Today Show this week telling her story.
Perhaps the NBC affiliate in Maryland would be interested in your story.

Lyme report: Montgomery County, MD said...

Jane, I just wrote a blog to address your issues.

Ben- contact me by phone. Ask IlADS if you don't know who I am.

You are correct about the cost.
I don't see any other way.
I want to go the political route.
If I go at it the wrong way it make the board more inclined to be punitive.

Ken Poindexter said...

LymeMD-

I am a patient of yours and would like to help in any way I can. You are the first hope that I have had in over 1 1/2 years being really sick, along with 14 years prior to that suffering on and off symptoms.

Please let me know what I can do to help. I dont know what I will do if you stop practicing.

Rania said...

FYI: This is what I'm sending...

Dear Senator -----,

I am writing to plead for your intervention in a case before the Maryland State Medical Board against Dr. -----. He is being unfairly pressured to stop his treatment of Lyme’s Disease patients by zealot doctors who choose to believe that this condition does not exist. As a person who has suffered for over ten years with an unknown illness, recently diagnosed as Lyme’s, I am horrified that a state board can bully a caring doctor into not treating patients like me.

Last year Dr. ----- was the thirteenth doctor I had seen in my ten year journey for health. After thousands of dollars, countless tests, I had finally stumbled upon a doctor that understood my symptoms of chronic fatigue and constant pain. I was most impressed with Dr. ------ command of the scientific and medical literature concerning Lyme’s Disease. I deeply respect his science based methods for treating this complex and debilitating condition. Most Lyme doctors charge thousands of dollars upfront. I was thrilled that Dr. ----- worked through my insurance, and I only had to worry about a co-pay. In the past, I had avoided going to so called “Lyme Literate” doctors because they turn the treatment of Lyme’s Disease into a rich man’s luxury.

This past summer the most amazing thing happened, I regained energy that I had not had in years! My life became open to me once again. I am still in treatment and regaining health day by day. Please do not allow my hope of a complete recovery to be taken away. I cannot afford to pay out of pocket to doctors whose rich clientele gives them the resources to fight back those in the medical community who are too rigid to acknowledge Lyme’s Disease. I also cannot afford to relapse and become unable to take care of my young family. Please do not allow me to go that dark place again.

Sincerely,
Rania ----

Rania said...

Here are the email addresses:
Maryland Senate President
thomas.v.mike.miller@senate.state.md.us

Maryland Speaker of the House.
michael.busch@house.state.md.us

Susan said...

Great letter, Rania! If I'm in a different state, do I send a letter to Maryland Senator or my state...I live near MD.

BryanR said...

There is a bill that would allow long term antibiotic treatment.

http://www.cga.ct.gov/2009/TOB/H/2009HB-05625-R00-HB.htm

Bryan Rosner

Ambitionn01 said...

We need to move from the defense to the offense. Charges need to be brought on those who go after lyme doctors. We need Attorney Generals involved, Congressman and there is a governmental Fraud, Waste, and Abuse agency to make complaints to. The complaint is that the IDSA and others with ties to insurance companies are preventing doctors from treating for lyme, which is costing the government likely billions is Medicaid and disabitlity benefits since we then end up disabled. This is a good idea, we need to run with this.

Sunnisideup said...

Love to see so many rally. This doc and many others need help as he/they are being unfairly attacked. I was at ILAD's meeting last year and questioning if/when/where/how there was some way of coordinating a data base of information for helping docs who come under attack from Medical Boards. From good, affordable (??) attorneys throughout the country, already copied, available, documentation supporting Lyme diagnosis, treatment, follow-up care. No one I spoke with seemed to care about the next doc to have his/her head roll. Seems not only is this community divided by HOW to treat but each doctor is out there alone. (Not dismissing the wonderful people at ILADS--How much can a small group do?)I hoped for spreadsheets, documentations, dvd's, other doctors on file stating how they diagnosis, treat and follow each case. Include each states representatives (so the patients of the doctors can help to change the laws), all boxed and ready to go to the next doc in need. BEN, LOVE YOUR IDEA, ACLU. Hi-Bryan, glad you are still here, thanks for the link. Ambition - Not sure about so much politico: Attorney General, more government, even liberal ... Politics are powerful, more so than common (medical) sense. They will listen to the most powerful, as always. May be costing the government money but the IDSA is SAVING the insurance companies GOBS of money in testing and treatment. Who is smarter (stronger)? Lobbyist for Insurance companies or our government? The last thing the insurance companies want is another "chronic" illness.
Finally: WHEN and I do BELIEVE WHEN Chronic Lyme is welcomed into IDSA world, they will take it over and then insist the family doctor" is unable === incapable, of treating such an illness. Politics. Let's keep our doctor's treating. These are my thoughts only and what do I know?

katman said...

My name on the website www.cpnhelp.org is katman. I have finished four years and four months on three or four daily antibiotics for Primary Progressive Multiple Sclerosis. My disease was undoubtedly complicated or caused by a tick-borne factor - I was never tested. If I had not done this, I would be dead. Yes, there is a bacterial cause and a treatment that will work, if these deniers would get to work doing something constructive. I will do what I can to help with this courageous, life-saving pursuit.
katman

Rania said...

Hi Susan,

The doctor who writes this blog is being investigated by the Maryland State Board. Therefore, letters should be sent to the State of Maryland Senate President and the State of Maryland Speaker of the House. Those who live in state, can also send to thier congressman.

Susan said...

Bryan, thanks for the info on the bill! Now that would be a great way to bypass some of these ridiculous guidelines.

Do you know when they vote? I couldn't tell by the link. Oh, I hope that passes!!!

Thanks, Rania...I'm going to send a letter to the e-mail address you posted.

TAK said...

I don't think it's a good idea to slam LLMD's to politicians who we are asking to support our LLMD's.

This plays right into the IDSA rhetoric which claims that lyme doctors are taking advantage of lyme patients for money. I think that is exceedingly rare.

There are valid reasons why most can't take insurance etc... One reason is pertinent here and that is so they can afford to defend themselves when the need arises.

Another is that insurance companies are often involved in reporting lyme doctors to medical boards.

I'm far from rich but I get treated via an LLMD who cannot take insurance without giving up his treatment preferences because if you don't treat the way they want, they often cancel their contract with the doctor.

As far as expense. You get what you pay for. Most LLMD's spend a huge amount of time with each patient. We are a very sick and complicated patient population. They deserve at least the same pay as the doctors who bury their head in the sand and choose to ignore us.

Lyme report: Montgomery County, MD said...

United Health has never turned down any therapy for Lyme. Their web site discusses the controversy.

It is a myth that insurance companies turn in doctors.

Only malacious IDSA doctors.

TAK said...

Montgomery County MD,
There have been numerous annonymous complaints. How can you state that you know for a fact that none of them were initiated by an Insurance Company?

http://www.lymeinfo.net/masmith.html
TESTIMONY TO MASSACHUSETTS COMBINED HEALTH COMMITTEE
By Pat Smith, President, Lyme Disease Association, Inc. 10-12-05
"While trying to solve the issue of physicians right to treat in NY several years ago, LDA was told by the NYS Office of Professional Medical Conduct (OPMC) that they get some of their best tips from insurance companies"

http://tinyurl.com/b6oepk
"The unjustified OPMC procedures were based on erroneous claims that a mere few weeks of antibiotics were sufficient to effectively cure all cases of Lyme disease, in spite of contradictions by numerous research studies. Many of these attacks on Lyme physicians appear to have been initiated by health insurance companies who want to avoid paying the expenses of long-term medical treatment in spite of its appropriateness."

gale said...

Lyme MD
I can only contribute by offering moral support.I am Danish but follow your blog -and good work.The best of luck from here.

Anita said...

State Senator Robert Garagiola (D-15) will meet with constituents on Saturday, Feb 7 at the following locations:
11:00am - Noon at Kingsview Village Giant Food Store, 18331 Leaman Farm Road, Germantown
1-2pm at Germantown Commons Giant Food Store, 13060 Middlebrook Road, Germantown
3-4pm at Neelsville Giant Food Store, 20944 Frederick Road, Germantown. Call 301-858-3169.

This information was extracted from the Feb 4 Gazette.

Possibly a good opportunity for locals to personally discuss the situation.

Rania said...

Hi LymeMD,

I received a response from the MD Speaker of the House which recommends that I send my letter to the Executive Director of the Maryland Board of Physicians. Would you like me to follow his advice?

Also, I can post the contact info for the director, but await your approval. Thanks!

nwhite said...

You are my Doctor and you have helped me a lot. I will write letters to everyone I can. I am so sorry you have to go through this stress. Thanks for all you do.NWhite

Lyme report: Montgomery County, MD said...

Do not complain to state medical boards. Reforms must come from our elected officials.

lyme4achange said...

Must they, Good Doctor?

Lets talk abbout this for a second.

You are right, addressing the medical board will do nothing. I am confident your words are correct. As far as our elected officials...yes, and no.

You know and I know the public law signed by Bush did nothing. That was federal law based on commitee recommendation. It should have, in a perfect world, surpassed any state or local issue. Yet it did nothing for you the Doctor in clinical practice and nothing for me the patient.

Lyme has its own set of politics and own set of rules that may very well superceed any law, federal or otherwise. even George W. hid his diagnosis for a year, and we are still in the dark about what they found on the shoulder MRI right before he left office. Most people were too enchanted by the inagaration to notice that he was having an MRI or bothered to wait to listen for an outcome that never came. I was more interested in the outcome of the MRI.

What do you want to bet they couldn't see anything and gave him some Cymbalta?

(OK...so wrong but yet so RIGHT)

Why do you think even HE wouldn't speak up about this when he has it too?

OK...I'm not a conspiracy theorist and I am not the next author of "escape from Plum Island" or any of that stuff. But clearly these is something we don't know. Probably not a conspiracy but when politics and money are on the line, as well as the careers of some very powerful doctors, do you really think our elected officials, who are clearly privvy to something we are not, are going to get involved because of some letters?

The LDA and "activists" have been writing letters to local and state officals for DECADES and it has solved nothing. I think Albert Einstein wrote the thing AA uses about doing the same thing over and over and expecting different results is insanity, right? Or something like that.

The legislatures will not get involved until the media gets involved and there is pressure from more than just a VERY SMALL special interest group of, generally destitue from medical bills, brain injured lymies who, myself included, do not always make the best decisions!!

No one is reporting this as it should be reported. When it does get reported it is to lambast Jemsek or whomever the "lyme quack" of the hour is for being a nutbar who lost his license (not that I am calling him a nutbar, but you know that mainstrem sees it that way).

I want you to continue to practice. But I don't think more letters is going to do it.

First, you have to urge your clients and patients to get to DC for the open hearing on the new stacked ILADS review board issues. Phisically be there and go to the IDSA site and have each sign up to speak. Have your patients get the media involved. Have them write an editorial for the local papers. Have them ask local newspaper journalists to interview them as a human interest story. Have them write to personalities, not just to the stations, like CNN and Fox.

Write to Glenn Beck. He likes to cover stuff others refuse to cover. Write to Neil cavuto, he has MS and knows what it is like to be sick (just don't have anyone start out with YOU HAVE LYME IF YOU HAVE MS like some activists are wont to do, he reportedly will not as of yet report on this because Lymies have accused him of having lyme...and its a real turn off). Let them know about the IDSA hearings and that someone needs to cover it.

Yes, it needs to start with our elected officials. Whether it is protecting one more doctor from being removed from his clincical practice and for sufferers as a whole. But No, another writing and phoning campaingn? If it hasn't worked in the last 20 years, I think it is time to change our strategy if you really do want reform.

We need to be brainstorming for ideas on what will save you AND US in the larger picture. Me, I am all the way in Western Maryland and a few hours from you and have never been a patient. I have considered it, though, and I wouldn't like you to go away before I get that opportunity. I just do not want your effort to be futile in all this by falling into the pit of the same old stuff

You want reform? Me too. It starts with not doing things the same way we always have. Just because it has always been that way doesn't mean its working.

Clearly, its not.

Moosie said...
This comment has been removed by the author.
Moosie said...

@Bryan R:

The CT bill 5625 is dead, but only because it appears to have been duplicated. The active bill is HB-6200, which is in the hands of the Public Health Committee. There was a public hearing last Friday, and they'll vote on it soon.

Here's a link to the bill:
http://tinyurl.com/ac3ms9

Lyme report: Montgomery County, MD said...

Here is the problem:

Of course you are right. The IDSA is not a malicious group.

Borrelia species have been around for thousands of years but rarely caused serious disease until the 1970s. By some process, the bacteria mutated and became very pathogenic.

It doesn't behave like other infectious diseases. Most have an acute course which fits neatly into a disease pattern. Here is a slow pathogen which makes people sick over a long period of time in various ways.

Physicians are not scientists. They are clinicians. Organized medicine has tried to put Lyme into a familiar box. Many of the physicians creating the guidelines do not see and treat Lyme patients.
There guidelines are extrapolated from what is known about other common bacterial infections.

The science shows something different. Scientists and physicians live in two separate boxes and do not communicate.

There are only a small number of infectious disease docs in the country. They are closely bound together, in part because of their small size.

If one looks at the IDSA web page, what jumps out is that the organization is focused on financial issues. ID docs want to maintain control over the use of antibiotics. When they are sued by Lyme groups they only become more defensive and intransigent regarding their position. Science is thrown out like the proverbial baby with the bath water.

It is a conspiracy of ignorance and an unwillingness to consider facts which contradict the convenient paradigm. There are also proprietary concerns about the IDSA's perceived need to maintain a lock on the use of antibiotics.

People frequently act in illogical ways when they feel threatened. If they admit they are wrong about Lyme disease it begs the question: what else are they wrong about.

The house of cards could come tumbling down.

Remember, tobacco execs refused to acknowledge that their product caused cancer, and so testified in front of Congress.

The Church meant well when Galileo was imprisoned for suggesting that the earth was not the center of the Universe.

Conspiracies are real, even when the conspirators are acting in good faith. This is not theory. As you will recall- the road to Hell is paved with good intentions.