first follow up visit....shocked and confused

She needs to be taken of the LLMD list...that's for sure.

No cysts? wrong

one abx at a time? for chronic lyme? wrong

So sorry you had to pay for that visit and sorry you wasted your time and money.

You need to find a new LLMD...sorry...

I'm so sorry, Pmm! But I have to agree with Girlie and Jenny on this.

Would you be so kind as to send either Girlie or I an email with the name of the LLMD that you are seeing so that we don't continue to send people to her? We would surely appreciate it. We can give you any referrals that we have at the same time, if you would like.

Do you wish to see the list of places you can contact for a LLMD referral? Those can be posted again if you could use them.

Again, I'm so sorry, but better to find this out at the beginning of treatments rather than later on.

Traveler, I emailed you her info. I do have someone who came recommended. I got it when I was thinking of a second opinion weeks ago. Shoulda listened to my bacteria ridden gut!

Thanks girlie! I've had symptoms for over a year. I'm just worried about getting worse.

Pmm where did you hear of this llmd? Through ilada?

I'll have to check where I got her name from. I think she's on a couple of lists but she's very involved with ilads.

same thing happened to me, with the same responses...any chance this is a doctor in CT?

dbwilco said...
same thing happened to me, with the same responses...any chance this is a doctor in CT?

Sorry to hear that! It's very discouraging, aggravating, and confusing to experience. My doc is in NJ.

Aww, thank you for your kind words, Pmm. I believe I'm speaking for all the mods here when I say, we still feel horrible that this doc was not only on our lists, but that you had such a terrible thing to go through!!! It's heartbreaking (and sometimes horrifying) for us to learn of someone having to go through something like that.

Take heart though, you had a part in "outing" someone that has no business treating Lyme patients. And thank you for that.

As you pointed out, we MUST do as much research as possible on a LLMD that we are considering seeing, up to and including calling the office to ask questions, and if they won't answer questions over the phone (some really good docs just don't want to "tip their hand" over the phone when they can't identify a patient from someone wanting to close them down), then use your first appointment to bombard THEM with questions about their practice, their protocols and more.

It's in our best interest to do so. Remember, WE pay THEM for their services, so it's up to us to be sure we are getting the help we need.

Traveler, it's easy to say nice things about you and the others on here! Please don't feel terrible. I had an initial feeling that I would need a second opinion or that something wasn't right.

I'm wondering where the literature is that supports the idea that cyst forms do not exist. She said that is a very old idea.

happyjo said...
Some patients may be helped with 1 abx @ a time -I know this is contrary to what most forum advise. But this doc letting you lose without continuing any abx-baaah!

Maybe there is an undertow exerting legal pressure on this doc? Or maybe this doc just plain sux!! pmm~so sry u went thru this! I know how emotional & traumatic it can be!

Is there a link showing who were former ILADS presidents? That shoud be permitted, no?

She basically said that because I just have Lyme and no coinfection, more than one abx wasn't necessary. But when I questioned her about the accuracy of coinfection testing, she dodged the issue. She did say that anaplasmosis is the most common coinfection in NJ...have to look that up as well.

As far as legal pressure....she is currently involved with a clinical trial at a NY University (not sure if I can mention it?). Part of me thinks she is tailoring her current treatment to support that trial whether or not the patient is enrolled in it. Ethical? No, but it makes the most sense. (I had professors in grad school who did the same thing with their classes.)

I also tried to look up previous ILADS officers...no luck. Trying hard not to obsess over this lol It's got me curious as to what is really going on!

Well, I hope at some point...if you're not totally healed on lyme only treatment...that she recognizes that most of us do have one of the other two big players (Bart and Babs)