posted 27 March 2005 10:30            

The Daily Times
Salisbury MD
March 26, 2005

Group wants more options in Lyme disease treatment

By Monique Lewis
Daily Times Staff Writer

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

SALISBURY -- Efforts to protect doctors who administer care for patients with
late-stage Lyme disease and place treatment fee responsibility on insurance
companies have been struck down by the Senate.

The Eastern Shore chapter of the National Lyme Disease Association went before
the Education, Health and Environmental Affairs Committee on March 10 to seek
permission granting physicians the right to use long-term antibiotics for
patients with the disease. The committee amended the bill, Senate Bill 596.

"We feel now that the bill isn't in the best interest of people with Lyme
disease or those who will get it," said Pamela Andrews, co-founder and vice
president of ELDA.

Andrews said the Maryland Board of Physicians will send letters to doctors
instructing them on how the disease should be treated.

"Sen. Paula Hollinger said that the Senate bill tries to dictate how doctors
should practice, but we were just trying to give doctors more options for how to
treat Lyme disease," Andrews said.

The association also presented a sister bill to the House of Representatives'
Health and Government Operations Committee, Bill 1323, on March 11. The bill's
goal was to establish a task force to study Lyme disease.

ELDA co-founder Dale King said the Senate's actions prove they don't believe in
long-term treatment. King, his wife Jackie and all four of their children have
Lyme disease. He said the amendments are unfortunate, because business will
continue with the usual approach that has done nothing to help patients who have
chronic Lyme disease.

David Weld, executive director of the American Lyme Disease Foundation, said
that much research has shown that patients have also been diagnosed incorrectly.
In 90 to 95 percent of the cases, the bacteria -- borrelia burgdorfer -- is no
longer in the blood.

"Some symptoms do persist," Weld said. "The bacteria may have caused a reaction
in the body that give symptoms in the body which we don't understand. The
problem is that some physicians treat with antibiotics even though the patient
doesn't have the disease."

Weld said that nearly 20,000 new cases are reported to the Center for Disease
Control each year and probably five to 10 times more go unreported.

"Some patients want a positive test to help explain what they have," Weld said.
"I know of people who tend to over diagnose treatment and the CDC knows of them
as well."

International Lyme and Associated Diseases Society President Dr. Stephen
Phillips said the only treatment available to doctors are antibiotics.

· Reach Monique Lewis at 410-845-4656 or mlewis@....

posted 27 March 2005 15:46            

Lou, may I ask you a personal question? I read in the last couple of days something about the Bachman's who apparently began lymenet and then left since they were better.

Then your name was mentioned "something about giving you a break too".

I don't know the Bachman's or their situation. Are you related to them or were you the moderator back then?

If you don't want to answer any of my questions, I understand.

I've personally found you a wealth of info especially of Cal. LDA, CALDA, and their advocacy. Thanks for your consideration.

posted 27 March 2005 17:41               

Now, if they really want to channel that energy into something, here's what they do.

I know of a supprort group that mail's about 40 letters a year to various doc's in their state. The mailings include info on lyme, difficulty in diagnosment, etc., and would these doc's be willing to treat lymies.

The group offers to support the doc's with educational information, to bring them up to speed on proper treatment.

The mailing they did this year yielded one doctor who was interested, but stated she had 5 more that would be very interested as well ! This group refers patients, and then assists doc's in proper treatment protocol's.

Just think if all support groups did the same thing. You wouldn't have to plead with some bureaucrat, or legislator for help. This thing could grow exponentially.

50 doc's this year, 100 next, 200 next, 400 next, etc. The shear numbers of doc's treating appropriately, would reverberate through the rest of the GP community, and raise awareness even further.

posted 28 March 2005 09:59            

Sen. Paula Hollinger decided (alone or with others?).. for some reason I don't know(?).. to change the wording of the bill AFTER it was submitted... to say that the Maryland State Board of Physicians (part of the Health Dept and under the leadership of the Governor- who both have been a TOTAL nightmare concerning this situation for years)... anyhow...

The altered bill wanted THEM (Board of Physicians) to send out info to doctors across the state on how to treat or NOT treat Lyme disease! She (or someone in the committee?) removed nearly the entire bills contents and replaced it with the lines about the Board of Physicians telling doctors the guidelines and what to do or not do for Lyme patients.

Ahhhhhhhhhhhhhhhh!!!!

TOTAL NIGHTMARE!

That was the VERY reason for the bill in the first place.. to get doctors to treat.. NOT to get them to NOT treat or follow limited guidelines.. which is the Health Departments current take on the situation!

The Health Dept here and other people somehow connected to them are actually STILL standing by and are promoting several horrible situations. These situations have forced many Lyme folks from this state to go out of state for treatment. They are standing by the Bumsteere guidelines and adding more insult to injury...

Such as...

1. One pill of doxy when bitten in an endemic area, to cure/prevent Lyme disease.

2. The bacteria are "sterile" once treated and any further symptoms are a result of something other than a current active infection... therefore NO more antibiotics.

3. They (the Health Dept and doctors here) are doing fine and doing a good job... blah blah blah... and Lyme is no big deal here. I was actually told Rabies is more important here now.. yes NOW.. than Lyme disease... even though Rabies is MANY years old.. has been researched.. documented.. has had a life saving treatment developed for many who are exposed... and the numbers are MUCH less... and the education and funding has been available and promoted for YEARS here already.

Soooooooooooo.. to pass this bill in THAT form would be a nightmare!!!

Hopefully it will be kicked. That was the goal once we found out it had been altered to NOTHING like the original. All of the doctor protection was removed from the bill.. and so was the insurance protection and long term treatment options.

It was like.. we submitted a can of peaches for consideration and approval.. and we ended up with a card board box full of rotten clam shells in it's place. ????

HELLO!

So... the bad news is, it was altered beyond recognition.. the good news is, the ones putting it in the Senate for passage thankfully are trying to NOW get it tossed before damage is done.

Now.. MY take on it..

I have been checking out the Health Dept members here.. and the Board of Physicians members.

What a nightmare!

I haven't finished researching the whole group yet.. (puke, research... puke, research) but what I have learned..

Nearly all have a tie to... either/or..

Hopkins- Our BIGGEST nightmare who is responsible for so many of the "A.B.L.S." cases we see (Anything But Lyme Syndrome).

Kaiser Permanente

Other insurance companies

Bumsteere and the "Out to Lunch Bunch" who have had their lips surgically sewn to Bumsteeres butt

ID ducks and their groups

The OLD Board of Physicians Quality Assurance that was considered SO bad by some (due to problems concerning leaning in doctors favor when a patient complaint was made).. that a new bill had to be entered in the Senate, and was passed, to try to FIX them and hold them to better standards and make them TRY to do a better job.

In MY opinion.. these are NOT the ones we want dictating to doctors across Maryland about HOW to treat Lyme disease.

Now.. HOW this happened.. I don't really know. NOT being polly ticky.. I don't understand the process. I do think though.. that to have that bill passed would mean major doom for many more people who either have Lyme or who will GET Lyme in the future.

As I have been shouting from the mountain tops over the years... and in MY opinion...

Hopkins ducks have been allowed to influence the Health Department and the Lyme situation in this state... and that is one reason why there are so many severely sick folks showing up at our doors crying and begging for help for the chronic stages... and why over 90 percent of them must go out of state to be properly tested and treated.

We are NOT in the "stupid about Lyme" state here in Maryland. We have tried to educate and work with these people for YEARS! We are smack dab in the middle of the "EVIL" side of Lyme.. in other words... those who KNOW better but are trying to save their collective butts for messing up so bad in the past.

Sooooooooo.. that is what I think... and is MY opinion.

Please stand by for more updates as they become available.

Otay?

posted 28 March 2005 11:07            

On the subject of the MD bill, it is obviously bad for state lymies that both Johns Hopkins and NIH are in MD. Four star duck hotels. Guess no one important at either one of those places ever had chronic lyme.

posted 28 March 2005 13:33               

Yes, I heard about how they ammended the bill and how much it would suck for Maryland. So, hopefully it will definitely be kicked out.

posted 28 March 2005 14:47            

TC, glad you updated us on all your research.

posted 28 March 2005 21:27               

quote:

---

Originally posted by lou:
I kinda wonder if she heard privately from the steerites at Johns Hopkins, etc. and that influenced her actions.

One JH doctor trumps hundreds of patients.

---

It just won't happen that way, unless you can drag Maryland doc's up in front of legislators, who have been persecuted. Even in NY, where persecution was rampant, they couldn't get legislation through.

Recruiting doc's to camp B is the only way. When you walk into a hearing with 5 or 6 doctor's on your side, and they can state the difficulties in treating lyme, it will not fall on deaf ears.

Every support group recruiting doctor's to treat lymies, accomplishes two goals. First, lymies get decent, humane treatment. Secondly, the stigma associated with long-term abx treatment fades as more doctor's utilize it.

The last thing Maryland needs is a panel of ducks sending out "treatment guidelines" on lyme. Surely, no one will ever get treated adequately, as any Maryland doc will be terrified to treat outside of these "guidelines".

Much better IMHO, to quietly go about the business of recruiting, educating, and referring patients to doc's who are interested in providing compassionate medicine.

posted 29 March 2005 09:25            

The problem is that people have been trying to educate and enlist docs elsewhere for years. Sometimes they agree to treat, but then are persecuted or hear about the persecution, and goodbye.

Some docs in my state used to treat patients and now won't even test them. Would rather have a pneumonic plague patient in their offices.

One doc who was treating lyme and AIDS patients, thought of as a modern day St. Franicis, decided he no longer wanted lymies. A doc who told me that what was happening in NY was a crime, dumped me and her other lyme patients after a couple of months.

My feeling has been that more docs would agree to treat if it were safer. If the state medical board and the ins. cos. weren't on their case.

Where I live, anyway, educating and recruiting isn't going to work as long as these docs are facing ruin from treating us.