LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Activism » www.MarylandLyme.org

 - UBBFriend: Email this page to someone!    
Author Topic: www.MarylandLyme.org
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
In honor of "May is Lyme Disease Awareness Month" and to assist with educating health care professionals, patients and the public about Lyme and tick borne diseases, a new website has been established, a first of its kind for the State of Maryland.

www.MarylandLyme.org

The site currently contains over 250 pages of information on Lyme-related topics that we hope you will find useful.

We will continue to add to it to keep you up-to-date on the latest news and information.

If you have suggestions or would like your event or group information to be displayed, please contact us at:

[email protected]

*** A special thanks to the Harford County Lyme Disease Support Group, Inc. for the monetary donation required to publish this site.

[Big Grin]

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

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
Looks like loads of info. Great Job.

If you paid for this you might consider having them trade fonts/colors that are easier to read.

I am a lot better than I was and I still find it hard to see.

Or maybe stick a sticky like the font size changer on this site in upper rt. corner.

Love it. http://hispaniclyme.com/index.php/sintomasydiagnostico

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good job, TC! I'm sure this will help a lot of folks in Maryland -
Posts: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Hey Pine...

Can you tell me what is hard for you to see? You said colors and fonts.... so not sure what page or what colors?

I don't have another computer to see what you or others see.... so I can't tell.

Thanks!

[Big Grin]

Robin 463936..

Thanks! Hopefully folks from other states will find it useful too. Lots of "it don't matter where you live" info on it.

We needed a site for maryland though. Twenty-five years of mailing literature out and phones and then emails... but that is wearing us all down.

Hopefully this will give us more time to do more stuff.

[Big Grin]

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

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
I read better on just blocked letters-not slanted

and size to me would be useful if it was larger.

As for colors I tend to shy away from.

It is a neuro thing. I flunked the neuro eye test.

I could only see the top line. Makes you feel odd

when you look with both eyes and wa la there are

lines in all them blocks.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Thanks for the suggestions. I adjusted the front page hopefully more to your liking?

The other pages are fairly simple, but as I come across those that are "off", I will adjust them too.

Thanks again!

[Big Grin]

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

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
a mom
LymeNet Contributor
Member # 23920

Icon 1 posted      Profile for a mom     Send New Private Message       Edit/Delete Post   Reply With Quote 
The site looks very good.

I have a question about the following statement I found on the site in a letter titled "No Legislation Please".

If this is true:
"The Maryland DHMH hosted a Task Force that included patient advocates on its subcommittee. Their final report included a re-confirmation of the doctor protection statement originally issued by the Maryland Board of Physicians. The statement also confirmed that no set standard of care had been enacted for our State, leaving doctors and patients open to making choices for their health care issues."

Then why did all the ILADS recommended LLMDS close to Bel Air close their doors to Lyme patients? I had a list of 3 names, I called all of them looking for help. The last one I called, was leaving clinical practice all together, she told me to read Pamela Weintruab's book as she was leaving her office, literally leaving her office...that day.

Is there any way to get statistics to prove that LLMDS are not persecuted in Maryland? The doctors still seem nervous to me....

Posts: 124 | From Maryland, USA | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Thanks a mom...

You said.. "Then why did all the ILADS recommended LLMDS close to Bel Air close their doors to Lyme patients?"

First of all... Sorry, but I've not heard that before... and don't know why ILADS would do such a weird thing. ???

If they did that (and they could have- strange things are happening lately with them that are not cool)...

Why would the other LLMD's in Maryland or anywhere else still be practicing... and why only those three that you mentioned in one small area- why were they the only ones told to close their doors?

Also, I don't know of one, much less 3 LLMD's near Bel Air. And I am assuming you mean the town of Bel Air in Maryland?

I'd like to respond to your question above, but this isn't "clicking" for some reason. Can you explain more?

``````````````````````````````````````````````````

You said... "Is there any way to get statistics to prove that LLMDS are not persecuted in Maryland?"

Yes, you can check the official records which are listed on the Maryland Board of Physicians website to verify that.

And/or check the testimony of the Board of Physicians that was submitted this past year and in previous years ...

And/or ask the legislators and the handful of people at that early meeting when they were discussing bills. That is another time the Board of Physicians said they weren't being prosecuted ... (and I was told he was treated rudely to say the least)... and that was long before the bills were introduced that the facts were on the table for all to see.

``````````````````````````````````````````````````

You said.. "The doctors still seem nervous to me...."

They are not only nervous here, they are nervous everywhere.

The main reason is the attacks on them by the IDIOT IDSA ducks and insurance companies who don't want to pay for your treatment.

Example- Check out Zemel, a CT duck whose testimony was recently tossed regarding Dr. Jones for being too biased against Lyme-treating doctors and the labs they use.

He has to be BAD if the crumb bunnies at the CT department of health let their own witness (Zemel) testimony be tossed, as hard as they are trying to nail Dr. Jones. My bet is Zemel will find it hard now to be a "credible witness"... a hit to his pocket book for sure. But anyhow...

It is bad enough to try to hurt Dr. Jones ... but that slyme bucket actually volunteered to help the CT health department nail ANOTHER Lyme treating doctor who he thought wasn't following the IDSA guidelines a while back.

This is only one part of a long history of IDSA supporters trying to kick us and our LLMD's.

Zemel told the health department in a letter about the other LLMD that they should...

1. Contact other ducks in CT to get information on the LLMD. One he suggested be contacted was Feder (UGGGG) and two others from UConn... and a Yale duck too... for their comments on a particular LLMD that Zemel wanted to nail.

2. Check with insurance companies in the state to have them check the records of this targeted LLMD to review his use of home IV therapy and to see how long patients were being treated.

3. NOTE- This is a quote from his letter. "Have one of your staff investigators pose as a patient, complete with vague symptoms and negative Lyme results but insisting she have Lyme disease. I would be happy to rehearse that investigator."

4. Examine records of patients to see if they truly fulfill the "established criteria for Lyme disease."

5. Look for "pay backs" or "kick backs" to LLMD by the home infusion company.

In MY opinion they are still out for blood and will stop at nothing... and we are getting rolled over in the process.

`````````````````````````````````````````````````
Example 2-

Then you have Ben Beard of the CDC who provided Jeff Engel- (State Epidemiologist in North Carolina) information after reviewing Lyme patients SURVEILLANCE reports about a LLMD and his patients.

Is that an appropriate use of our "mandatory" surveillance reports? I think not.

They don't prosecute doctors for NOT filing the mandatory reports and they go after the doctors that do... in a most SLYMEY way. Anyhow...

Engel sent the documents from Ben Beard to the North Carolina Board of Medical Examiners with a letter, trying to nail Jemsek... which they did.

Quote by Engel- "The CDC documents provided are concerning to the public health as they indicate:

l. Misinformation to patients on the sexual and verticat transmission of Lyme Disease,
2. Reports of prolonged parenteral antibiotic administration, and
3. Use of blood and urine tests that are not considered standard of care."

After seeing what has happened to Dr. Jones and Dr. Jemsek... I was there for both cases and watched the horrific garbage going on first-hand....

Do you blame the Lyme-treating docs for being nervous? I know you don't.

`````````````````````````````````````````````````

The Kicker?

We once had ILADS Guidelines that could be used to try to back up our position.

BUT... ILADS did not get the new ones done in time so they are no longer listed on the National Clearing House.

They were officially removed because they are considered by the AMA and several other organizations to be expired- more than 5 years old.

Now every time a LLMD does anything outside the IDSA guidelines to help their patients (basically every patient, every day) ... they DO have to be nervous.

Until ILADS and their buds get a new set of guidelines written and published ... IF they even can find a publisher now (?)... and get them back on the National Clearing House ... I don't see that happening any time soon (hopefully I am wrong)...

We are all "hanging" out there (patients and doctors) with no back up or safety net to support our treatment .... no leg to stand on.

Hope that helps explain and addresses some of your concerns.

[Big Grin]

[ 05-07-2010, 01:00 AM: Message edited by: Tincup ]

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

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
a mom
LymeNet Contributor
Member # 23920

Icon 1 posted      Profile for a mom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Tincup, Thank you for reply.

1. I think you misunderstood my comments.

You wrote "First of all... Sorry, but I've not heard that before... and don't know why ILADS would do such a weird thing. ???"

ILADS didn't "do" anything other than recommend 3 LLMDs close to my area when I called for help. What I found alarming was that all 3 of them had closed their practices to Lyme patients.

I don't know that those 3 were the only ones to close their doors to Lyme. I've only been at this since January 2010.

Does anyone else know of physicians who have backed away from treating Lyme patients?

There were no more llmds in my area to call. We had to travel 2.5 hours to find a llmd to take us. I think we're lucky. I know others who have to travel much farther.


2. Regarding "Nervous". IDSA is not a regulatory body and cannot take way a doctor's medical license, can they? They are just a "tool" to give cover to the real power. We need to identify the real power source.

If a physician is protected by law against having their license jeopardized for treating Lyme diesease, who cares what the IDSA thinks and guys like Zemel will have no power over our LLMDs.

3. Dr. Jones. I agree that Dr. Jones is being unjustly persecuted. I called and wrote to Gov Rell as requested (and was treatly quite rudely on the phone) and have sent funds and support to Dr. Jones. He is not our LLMD, but he is an icon and we are sending a message to IDSA/CDC with our support.

I will not be able to return here for 2 weeks. Look forward to reading your response.

Regards.

Posts: 124 | From Maryland, USA | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Let's say you and I are fishing. We both catch fish but you catch an undersized Rockfish and decide to take it home and eat it.

I can not write you a ticket or impose a $500.00 fine, no matter how much I would want to, but what I can do is gather evidence and turn you over to D.N.R. Fisheries so they can prosecute you.

Now change that example to- you are the LLMD and I am the IDSA.

If you (as the LLMD) violate the accepted medical "standard of care", then I (as the IDSA duck) can turn you in and you can be investigated and charged.

BUT...

If there were no "set" standard of care (like what we have now in Maryland) ... THAT is the biggie here....

And the free-to-choose what standard of care you want to follow issue is NOT included in the new laws that would be passed...

And the IDSA duck didn't spend all their energy trying to set up the LLMD's (like me sneaking and taking cell phone pictures of you with your fish or putting an undersized Rockfish in your cooler before you headed home)...

The LLMD would be free to treat patients according to their oath and even then, with the corruption that abounds in this system... that isn't even 100% for sure... but it may be better than nothing.

If it ain't broke, don't fix it.

`````````````````````````````````````````````````

You said... "Does anyone else know of physicians who have backed away from treating Lyme patients?"

Oh yes. Many docs have backed off treating Lyme patients for many reasons. And for many years we had NO LLMD's at all. Folks are VERY lucky today that they do .. and often have a choice.

Is the system perfect and are there enough docs treating Lyme as needed? Heck no... but it is MUCH better than it has ever been.

As for why the doctor you called ditched? I could make some guesses but do not know. I do know though...

Most docs this time of year already have a full practice and can't take on more Lyme patients. This happens every year.. nothing new.

Medicare and insurance rules (along with their threats) are some other reasons that are forcing docs away from treating Lyme patients. We are losing some more for this reason, in Maryland, and as we speak.

Retirement, moving to a new office, new docs in practice that are not wanting to be involved in the controversy, pain-in -the-neck Lyme patients by the hoards, and threats and warnings given by IDSA ducks and hospital personnel to our LLMD's are more reasons.

BTW- I'd still like to know who the 3 LLMD's around Bel Air are. Never heard of such a thing... and knowing would help group leaders in several states who also have not heard of any in that area and are waiting to know.

On another note- docs, who are not LLMD's, but may have made contact with ILADS, Igenex, MDL or someone else at some point along the way are often included on a list of possible LLMD's in certain states.

Therefore, take all lists of names of supposed LLMD's with a grain of salt.

``````````````````````````````````````````````````

I believe your main point is this comment ... "If a physician is protected by law against having their license jeopardized for treating Lyme diesease, who cares what the IDSA thinks and guys like Zemel will have no power over our LLMDs."

No law is going to stop docs who are treating Lyme patients outside the accepted medical standard of care from risking their license in some sort of way, especially if the IDSA standard of care remains intact and unchallenged.

Like in Dr. Jones case, they are going after him (supposedly- but we know it isn't true) for non-Lyme related offenses. At least that is what they keep preaching, telling everyone and getting away with.

That slick trick is sickening in its own right and to date we have not been able to stop it- nor have the attorneys who are experienced in this sort of thing.

Since you admit you are new at this stuff, I recommend reading up on Dr. Burrascano's case. He supposedly wasn't targeted for treating Lyme patients (after he testified against the ducks).. but was "nailed" anyway for clerical errors- paperwork problems.

No one can stand up to a white-glove inspection when those doing the investigation are bent on finding a problem (any problem) to use to their advantage and who don't follow the rules of decency or morality. Law or no law.

Dr. Jones too was slammed for going outside the regular (not Lyme) standard of care to help kids.

Both of these cases are "twists" that no amount of doctor protection laws will address adequately when evil forces and corruption abound.

Loop holes... real or not... will continue to be used by all who have an axe to grind... or a pocket book to protect.

The law in CT is not stopping the prosecution of Dr. Jones and will not stop other LLMD's from being targeted for other "unrelated" violations.

Perhaps you could look at our situation like you would Al Capone's. He murdered, bribed, boot-legged, etc... and did lots of nasty things...

When they couldn't nail him for those offenses, they finally got him for tax evasion.

Then look at this bill situation below, which was an attempt to make things better for Lyme patients in Maryland- and it went bad.. VERY bad... with internal and external messing with.

https://sites.google.com/site/marylandlyme/political-action/good-bill-gone-bad-1

Any one in Maryland who thinks they have the power to fight Johns Hopkins, the IDSA, the CDC, NIH, the Board of Physicians, the Maryland DHMH, and the insurance companies to get a really good and effective bill here that will actually prevent or stop the prosecution of our doctors (if it were even occurring- which it isn't) and make things better for patients, well, is dreaming.

And in turn those who would make the attempt anyhow are risking making things MUCH worse for both our doctors and our patients because their original idea might be sweet and well-meaning... but....

Once a bill goes bad with interference from the IDSA, CDC, NIH, DHMH, BOP ... it is next to impossible to stop it or change it.

Even the bill sponsor can not "fix it" ... IF they wanted to at that point.

Some folks won't care what the bill says as long as it is "close"- they will simply want a bill for the sake of having a bill (glory) ... and to heck with the consequences to those it was meant to protect.

Sad but true... I've seen it happen here and in other states before.

Hope that spells it out clearly.

[Big Grin]

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

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130

Icon 1 posted      Profile for lymie tony z     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yeah,
Doggone you TC!
I was gonna get up off of this here chair until I glanced at this thread....

I had to sit here and put up with the pains in my bod just to read it all....sheesh....

I know....I know....nothing this frustrating can be spoken or written about concisely....

the evil forces against poor sick folks are soooo corrupt and malignant.....

they remind me of the diseases themselves....if ya know what I mean....

Rhetorical there TC....

By the way...I finally got some paper and ink and copied the IDSA guidelines...geez...

What a waste of paper and ink....

Actually like I said in the other thread....it's a start....

But my next entry was kinda....oh gee...bi-polar...or something...

Dang it....just when I thought I was getting rid of those symptoms....LOL!

CUL
zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
a mom
LymeNet Contributor
Member # 23920

Icon 1 posted      Profile for a mom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello, we're back and thank you for the explanation TC.

What do you propose is the solution to protecting and keeping our LLMDS and access to medical care?

Pushing ILADS to reinstate their guidelines?

My daughter seems to be relapsing, not sure yet, but she said she felt like her fog was returning as is her abdominal pain (GI). She was looking so good over the past month and had started to teach herself HTML, but she couldn't focus yesterday, so although we're back home, I'm not sure what's going to happen.

I am sad, angry and terrified, seems to be our current state of existence.

a mom

Posts: 124 | From Maryland, USA | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.