Update on the Lyme doc hearings

[shazdancer]

Hi, everyone!

I wanted to let you know what has happened so far with the pediatric Lyme disease specialist, who is charged with prescribing antibiotics over the phone for 2 children without first seeing them in his office. The charge was brought by the children's father as part of a custody dispute with the children's mother. The doctor is my son's Lyme specialist, and I wouldn't be supporting him if I hadn't asked him directly what the story was. At my urging, a few of you contributed to his defense fund, and I wanted to update you.

I can't discuss everything about the case, because it is still ongoing, but I'll tell you a little about what happened at the first hearing. His attorney argued that the standard of proof should be "clear and convincing evidence," one step higher than "substantial evidence," which is customarily used in such cases. That motion was struck down -- no big surprise, but sad to say that doctors can lose their licenses over a much lower standard of proof than that used in a court of law ("beyond a reasonable doubt" is even higher than "clear and convincing"). Bringing it up now makes it possible for the attorney to appeal the decision if it turns out to be against the doctor.

Despite saying that the hearings were not about differences in diagnosis and treatment of Lyme disease, the accusatory (prosecuting) attorney spent a LOT of time grilling the doctor on his diagnostic methods, so much so that a member of the medical board told the attorney to stop it!

It was brought out in testimony that the charges were brought by an ex-husband with a grudge, who has gone after several doctors that his ex-wife has brought the children to, filing charges with medical boards in other states as well. The doctor testified that the ex told him over the phone, "I can wine, dine, and buy anything I want." Except the respect of his kids, apparently.

The doctor disclosed that he has treated over 8,500 children with Lyme disease to date. He appeared to be a slightly eccentric, slightly deaf old man, that is, until he started discussing the particulars of the disease. Reciting facts about the dozen or more reactive bands on a Lyme blood test, and what they all mean, and clearly doing it with no notes in front of him, showed him as the expert he truly is.

The medical board noticed it, too, because when the accusatory side tried to put forward a "pediatric Lyme expert," the responding (defense) attorney protested that the man was not an expert on Lyme. After a brief discussion about his credentials, a member of the medical board said to that doctor, "You and I are about the same age. We have probably seen about 30-40 Lyme patients in our practices, but I doubt that either you or I could interpret a Western Blot test the way HE can." The doctor was allowed to testify as a "pediatric expert" only.

At this point in the hearings -- when the accusatory side is still in the middle of putting on its case -- it is amazing that things are doing so well. The next expert witness, though, does qualify as a pediatric Lyme expert, who helped write the guidelines that the short-term antibiotics docs use, and should be a much harder nut to crack.

The next hearing is in May.

Thanks for your prayers, good wishes, and support!

Shaz

[dmiller]

And thank you --- for the update. :)

[shazdancer]

Meantime, this is what I have been up to...

Press Release, 4/14/06

MOTHER AND SON WALK FOR LYME DOC

[shazdancer] and her son, both from [Maine], are participating in a country-wide walk for Lyme disease during the month of April. The grassroots effort has been organized by Gumbo Ya-ya, the online message and support community for fans of Rebecca Wells, the author of “The Divine Secrets of the Ya-ya Sisterhood” and its sequels. Wells suffers from a severe case of Lyme disease, so the cause is dear to the hearts of her readers, who have followed her treatment progress on the board.

Chronic Lyme disease can be difficult to diagnose and treat. Patients may be misdiagnosed with fibromyalgia, multiple sclerosis, chronic fatigue, or depression. Doctors who are experts in the disease are often few and far between. Patients have trouble finding doctors willing to treat until their symptoms resolve, as many doctors believe they should not treat beyond a standard number of days. “The bacteria can travel to almost any place in the body and cause havoc,” said [shaz]. “Lyme disease is so much more than flu-like symptoms and a swollen knee. And it is hard for people who are sick with fatigue, pain, and cognitive problems to navigate their own healthcare.”

At the end of the month the walkers – some from as far apart as Virginia, Louisiana, and England – will tally their miles, and the losing team will make a donation to a Lyme disease cause, such as LymeAid4Kids, a fund that assists needy children in getting adequate testing and treatment. In addition, [shaz] is gathering pledges to make a donation to the Dr. Charles Ray Jones Defense Fund. Dr. Jones, the foremost pediatric Lyme specialist in the country, is facing the medical board in Connecticut because he prescribed antibiotics for two children over the phone. Said [shaz], “It is sad that in an age of telemedicine, this doctor -- who has chosen to spend his retirement years helping children devastated by Lyme disease – should have to justify prescribing antibiotics which are prescribed routinely for acne and other ailments.”

Anyone interested in pledging for the walkathon can contact [shaz] at [PM me].

Regards,

Shaz

[Belle]

AWESOME, SHAZ!!! Sounds like things are going the way they are supposed to be going. :) Good for that Doc!! Pity he's had to put so much time in defending himself for doing good. :( Does he still need money??

And I'll PM you about the walk-a-thon.

[shazdancer]

Yes, he still needs money. :(

Thanks so much for your help and concern.

It is neat to be able to do this walkathon, as a year ago, I wasn't sure I'd be able to be this active ever again. Then 3 weeks ago, a car flew through a stop sign and destroyed my car with me in it.

I was a bit banged up, but still walkin.' I'm walking for those who are too sick to walk, and for the doctor who gave my son back to me.

Regards,

Shaz

[shazdancer]

Son Jake and I, on our Walk Against Lyme Disease today...

Over the stream

Through the woods

The view from the top of Mt. Douglas, Maine

Happy Easter,

Shaz

[coolchef1248 @adelphia.net]

shaz

is that lake aubern?

don't forget to send me a letter!

Happy Easter

[shazdancer]

Hi chef! That's the northern edge of Sebago. We ran out of film when we got to the very top, but the view even on a cloudy day was amazing, and the chilly breeze coming up the mountain was, well, chilly!

I will put together a packet for you by Wednesday, thanks!

Shaz

[I Love Bagpipes]

I've been reading you posts on this subject and have had it in my thoughts and prayers. I had a neighbor who was diagnosed with Lymes too late. Sadly he lost his life. My heart goes out to you guys.

I also had a doctor who helped turned the course for my health. Different circumstances, but he was in a 10-year court battle. He continued to practice through that time...and he won. Patients wrote letters, set up a fund, and testified. Not only did he win, but that victory had an impact on our entire state for integrative doctors. He partially retired after that 10 years and moved to a different state. It wore him out. But he still comes back to our state 2 times a month to see his patients.

It sounds like your doc is in good hands. I am confident he will win...and it won't take a freaking 10 years!

Keep up the GREAT work Shaz! And never quit dreaming.

[shazdancer]

Thank you, Pipes! Yes, not everyone is aware of it, but occasionally people do die of Lyme disease. And way too many are severely impaired because of misdiagnosis and undertreatment. And most Lyme patients are children.

Some Lyme specialists use vitamins and supplements in addition to antibiotics and supportive medicines. A minority also use herbal products. Dr. J uses neither, but is open to them being used if they do not interact with the medicine and the parents think they are helping.

It is clear that Dr. J has a good lawyer on board. (He actually represented another Lyme doc against this same board, and won.) We are looking for a good outcome, and a pecedent that will allow Lyme specialists to continue to use sound clinical judgement in how they treat the disease, not just a rote formula that doesn't work, without fear of repercussions.

Regards,

Shaz