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LLLMD names - need for caution

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Posted 2/4/2009 3:39 PM (GMT 0)
Yesterday it was posted that an LLMD is being targeted in Maryland. It only once more makes it critical that everyone use discretion on naming physicians on the forum.

Does anyone else have ideas on how we can better protect these physicians. They are in danger.

Thanks,
bcaring
Posted 2/4/2009 4:56 PM (GMT 0)
This stuff is so scary. I just started to learn about chronic lyme and all the controversy surrounding it. If I didn't have such severe brain fog and cognitive issues, I would try to brainstorm and get involved but at this point I can barely post to the forum. lol This is probably the case with many of us. It's unbelievable that this has been allowed to happen and to think it might get worse is even more unbelievable.
Posted 2/4/2009 5:44 PM (GMT 0)
I actually think IDSA doctors know who the LLMD's are, whether or not we mention their names here. I've had rheumatologists and other completely random doctors say things to me like, "You're not seeing one of those doctors in New Jersey, are you?"
Posted 2/4/2009 8:43 PM (GMT 0)
Alfers,

I agree that IDSA knows who they are, as well as the insurance companies of course. What puzzles me, is how do they decide which ones to target?

I still think it is wise to be very discreet so that we don't provide any more fuel for those who wish to take away these physicians ability to treat, as well as a patient's right to seek treatment and to be reimbursed for it.

bcaring
Posted 2/5/2009 1:09 AM (GMT 0)
Hi b,

I agree with you. The less said, the less HW is watched. It lowers the threshold and members can continue to support and educate one another.

CT AG Health team is the place to voice your concerns.
You may email this address: [email protected]
In the Subject line: IDSA Lyme disease Review Panel

Blessings,
Sojourner
Posted 2/5/2009 4:29 PM (GMT 0)
And thank you Sojourner and Gracie's Mom for the insight and as usual well written posts.

We have some really articulate writers on this forum which makes it a pleasure.

bcaring
Posted 2/5/2009 11:01 PM (GMT 0)
I don't understand how they can not know who the LLMD's are, considering we can find their names online.
But it worries me about how secretive I am supposed to be. Today, the pharmacist was astonished about the expense and amount of drugs I was getting so I told him it was from a tick bite. He said a co-workers husband is suffering from the same thing and needed a good doctor. Is it wrong to tell these people who you are seeing? Did I goof up?
Posted 2/7/2009 2:26 PM (GMT 0)
Hello Nefferdun,

First, thanks for the post on bio-identical hormones. I am 57 and post menopause and I am making an appt. on Monday!

Good question on telling people who inquire about your doctor. Our pharmacies in this area are so used to filling prescriptions for tick bourne illnesses that if they wanted to make a report they could. Frankly, I don't think they have time. If they say they know someone who needs treatment then I would probably give them the name.

In my neighborhood there are many who have had lyme. A mother came to the door last week with her daughter selling girl scout cookies. She started rattling off all these names of people who now have lyme. If any were to ask me for names of physicians I would tell them.

In the past I have had several visiting nurses - one sees a Dr. R in NY. Anyway, they all know that you are being treated for lyme and who the physician is.

I want to tell others about lyme if they are interested. Most people in my area are aware that it is a big problem and know someone who has been very ill from it.

The doctors in the area are not very helpful with long term treatment. If they are, they keep it quiet. That is why these lyme literate doctors (at least most of them) are appreciated for the risk they take.

So, I think we just need to be very careful about the internet, putting things in writing, that kind of thing.

Take care and I hope you are on your road to recovery.
Bcaring
Posted 2/7/2009 7:31 PM (GMT 0)
As a 'grandfathered into this mess' educator, we teach others to talk with their LLMD first to ask how they would like you, as a patient, to move forward with referrals and what their policy is regarding that.

This way, no one is compromised.

We also spend an incredible amount of time educating the patient ensuring that they know we are not the doctor but simply vessels of information that includes only factual science that fairly represents both sides of the standards of care. Our goal is to equip patients to be able to advocate for themselves once they do enter the doctor's office, particularly regarding testing, indepth, so that the threshold of confusion and potential conflict are lessoned.

Blessings,
Sojourner
Posted 2/8/2009 3:59 AM (GMT 0)
bcaring, good luck with the bio-identical hormones. No more hot flashes, no more migraine, and SLEEEEP! Until the tick bite. . . . . .

I am glad I do not have to be too secretive. For living in an area of the world where lyme "does not exist" it is amazing how many really sick people I have met. I traveled 500 miles to the LLMD and the woman going in the office after me lives 200 miles from here in another lyme free area. Small world or the disease is far more invasive than we are lead to believe. She said the doctors she was seeing had given up on her.
The pharmacist said his co workers husband works for the forest service. Another person I met has a husband that tested positive for lyme, given a short course of abx , pronounced cured and is now receiving steriods for RA. He stuck with that program even though his wife expected him to die. I didn't hear from her again.
I went to a family doctor and advised him how to treat me according to Burascanno protocol. The last time I was there he said he had finally read the protocol as well as "a few other things". He proceeded to tell me I was not infected any more, I was cured and the symptoms I still had were nerve damage. That is when I decided I had to travel. I feel very badly for the people that are in the dark and very sick. I often wonder just how many of them are here.
Posted 2/8/2009 1:29 PM (GMT 0)
Sojourner,

I hadn't thought of asking my doctor for referrals and will do so on my next visit. I do try to educate those that want to know as best I can and also tell them to go fully prepared and organized for the appointment. By the time most of us end up with the doctor appointment we have a multiplicity of symptoms and tests that presents a "pattern" to those who are educated at diagnosing lyme. Thank you for your comments - well put.

Nefferdun,

I am becoming alarmed at the number of people that I suspect have a tick bourne infection - people in my area and from all over the country. Until there is a proof positive test, I am afraid it will go unaddressed or maybe in time with continued media coverage people will begin to demand that they be taken seriously and not just accept the standard diagnosis.

Bcaring
Posted 2/8/2009 2:02 PM (GMT 0)
I think all the posts that have doctor names should be edited to reflect initials only.  If people need more information about a doctor, they can email someone.

 


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