Concerns about ILADS

Hi all...I know we like to tell everyone that ILADS doctors are the gold standard but I've now had two experiences where ILADS trained doctors are ignoring Lyme specific bands and clinical symptoms and just saying "you don't have Lyme" because the test isn't positive.

I went into my LLMD (again, ILADS trained) with a CDC Positive test and she initially said "you don't have Lyme" (my StonyBrook test that she ran didn't come up positive, but it did have a positive 93 band.)

 It took several months for me to convince her to treat me.

I sent my mom to a doctor in NJ who is a founder of ILADS and my mom had a Lyme specific band on her test (but it wasn't overall positive), and she sent out for more tests, and now the dr. just cancelled her appointment and said her tests don't indicate Lyme.

I don't understand. How are we supposed to find doctors to believe us? I'm sorry, this is just really frustrating.

 

The thing is, even though they are ILADS trained, it doesn't mean they don't give to peer pressure, or pressure from whoever owns the practice.

With doctors just calling themselves LLMD's without any learning or guidance from ILADS though, you would really be in a bind, since there is no way to ascertain what they really believe about these infections. So ILADS trained docs, while they still get pressured to only take CDC positive patients, they still are the only ones that we can trust to at least be aware of what it really takes to treat these infections successfully.

It would be ideal if we could only use those doctors that are well known for understanding and treating these infections, but that would only leave a very small handful of doctors. Not everyone can drop their lives and move or stay out of state, or just travel out of state for each appt, so that leaves us with finding doctors that will fit our circumstances.

I healed using a practitioner that had never knowingly treated any tick-borne infections before she treated me. I had to do a LOT of leg work for her, and we had to talk a LOT as she learned - plus she had to commit to doing quite a bit of learning too. Not all doctors are willing to do that.

So all you can do is try to get in with a doc that is ILADS trained and if not, then you use who will see you and understand that you don't have to lead the way.

There are good and bad Dr.'s in every arena.

I went to two Endocrinologists - one blew me off - menopause he said.
I wanted another opinion - the second one - didn't mention menopause...but told me he thought it was a neuromuscular problem I had. Now, although he didn't mention lyme...he took me seriously and listened when I said I had nerve issues, balance issues and weakness - arriving at advising me to see a Neurologist.

There will always be good and not-so-good LLMD's.

I understand there are good and bad doctors. I'm sorry if my post was unclear. My doctor is fine, we are working together now. My point was that it seems to me like the "ILADS trained" doesn't seem to mean much when they can't even identify Lyme specific bands, or at least they don't care about them. But I guess it's better than a doctor who knows even less.

I'm frustrated in finding a doctor for my mom, because now we have to find and pay for a 2nd doctor, when we don't know if the next one is going to be any better.

Yes, exactly.

Traveler I don't think it's peer pressure. I strongly believe it's insurance companies lobbyists.
One less expensive category to cover.

I was trying to say (LOL!) that it was peer pressure due to the insurance companies and their actions. So I still agree with you, Jrpsf!! A doctor that was trying to help me, was told by his partners that he couldn't diagnose me with Lyme, even though I was CDC positive, as they didn't want that word in their files. I was too desperate for help to let that stop me from seeing him, since every other doctor in my area had already refused to see me at all - for any reason!