Good questions, and well stated. Some comments below:
Your question: "First--of the three LLMD's within 95 miles of me, not one of them takes insurance. Why is that? ... is there so much controversy about this critter that insurance companies and/or other Doctors ACTUALLY blacklist these guys?"
Yes. Ins. companies will and do, to my understanding, refuse to reimburse for what they deem excessive or inappropriate according to current medical standards. Current medical standards are established by various professional groups, which at the moment means the IDSA (the non-believers-in-Lyme group). The ins. companies are in business to take in enough premiums to cover the costs of running the ins. company and to reimburse patients for medical care and meds, so they have to not just keep writing checks for treatments that the experts [IDSA] think are invalid. (Otherwise, my doc would definitely be prescribing two weeks in Palm Springs for me every winter and the ins co would pay for it.)
I think the term is 'necessary and appropriate' treatment. The IDSA says long term treatment for Lyme is not necessary or appropriate, so who ya gonna believe, me or the IDSA?
As an aside, if you have HMO coverage, you're likely in even deeper tuna, because the HMO just won't pay for anything it thinks it shouldn't.
... AND if anyone reading this thinks turning over all medical care to the government is a good idea, consider this: the govt would set the standards for diagnosis and treatment, and the govt looks to the authorities in a particular specialty for guidance to set the standards, and that means the IDSA. NOT GOOD. There's no such thing as a free lunch.
Your question: "And, if so, what compelling, peer reviewed information illustrates to someone like me that the doctor I am going to see isn't pulling a scam on me?"
Read the ILADS website, read the medical journals, check the Columbia University medical center website at its Lyme research center for their work and findings. Educate yourself (like you don't have anything else to do, huh?), read up on your doc before you go to see what others say about him/her, keep your antennae up, and switch docs if it doesn't seem right. Buyer beware.
The IDSA looks down on ILADS docs, because the IDSA believes its standards are correct, and so anyone not following the IDSA standards MUST be a quack. If you step with Alice through the looking glass and see an LLMD, you are travelling into territory where you could indeed encounter quacks. I personally am suspicious of docs who insist that patients buy a pile of vitamins and supplements and follow a made-up 'protocol' [that word alone makes warning bells go off in my head] that seems incomprehensible to normal humans. IDSA docs think ILADS docs are all quacks. So it will be up to you to differentiate between ILADS quacks and ILADS non-quacks. Just one more chore, on top of being sick.
And, it's not necessary for a doc to be an ILADS member to be a good doc. It's a likely indicator, like if a guy you know is an Eagle Scout, it's a good indicator, but not insurance that he's not a jerk or worse if you go on a date with him.
Your question: "The initial appointment is $400--, and that was one of the cheapest among the three doctors I checked into! Now, I'm willing to pay, that's not it (I feel awful and have no other answers at this point). I guess it just feels a little odd to be told, 'We're happy to see and treat you if you are diagnosed with Lyme, but you have to pay out of pocket--we don't report to or accept insurance companies.' "
My LLMD didn't take insurance either, because it meant the practice would have had to hire a battalion of file clerks to process the paperwork, and then probably still have coverage denied for the patients, so why bother? It's a rational decision. I just paid the doc and then filed with the insurance company for whatever they would reimburse.
Your question; Finally--even though the Doctor doesn't take insurance, would that mean that any prescriptions given by that person wouldn't be covered? What about treatment? If an LLMD diagnoses me with Lyme and determines that I need IV antibiotics--would the treatment be covered?"
My prescriptions were all covered. I didn't need IV, so can't comment on that, but it is what it is, and the docs are well aware of what ins. cos. are likely to approve, and are willing to bend treatment to fit the insurance where possible.
"I'm just trying to figure out what I'm getting into financially. It is totally worth it from a health perspective, but I'd rather not be blind sided."
These are all excellent questions, and I think you have mapped the terrain very accurately. A lot of my expenses were not reimbursed because I was so sick I couldn't manage the paperwork, which was stupid of me, but I was even sicker than I was stupid, so I've tried to forgive myself for it. If you can't handle the paperwork, ask a friend to help you. I should have, but wasn't thinking clearly.
All your questions are exactly on point. And if the doc isn't a good fit, find another after a while of trying. Lyme is more art than science in a lot of ways, esp. for the patients.
You take care -- I've been where you are, and certainly understand. So hang on, and keep going -- stay in touch with us, okay? Best wishes to you --
Thank you so much. My gut told me a lot of the same things as you did in your post, but it is always nice to hear it from someone who has actually been through it.
I got a packet from the ILADS member Dr. that I will be going to in the mail yesterday. She included a letter explaining her background and reasons why she has become a Lyme specialist--interestingly, she noted that she didn't agree with ILADS either, until her 9 yr. old daughter was diagnosed with a particularly difficult case of Lyme. As a medical Dr. with a sick child, she did what all moms do--she studied and searched and did all she could to find out everything she could about this disease that was attacking her child--but she did so with an eye toward the medicine and the research. I have a good feeling so far--will be sure to check back after the appt, probably with more questions.
Biggest fear right now? NOT that I have Lyme--it is that I DON'T have Lyme!!!! There hasn't been a single good medical explanation for all the weird things I've gone through over the past 4 months, and yet, I've had little to no relief!!! I even gave my primary care Doc the opportunity to call me a head case--I told her I didn't care if that was the diagnosis, at least then I'd have something to work on and "fix." I'd be happy to see a psychiatrist for an anxiety related illness--her response--"this isn't anxiety. I don't doubt that it is playing a role, but there is clearly something medical going on here."
Great--it's "clearly" medical, but you don't know what it is, what to look for or how to treat it. Lovely!!! And if it turns out NOT to be Lyme, I don't even know where to turn next. *sigh*
So--here is to hoping that, whether it is Lyme or not, this LLMD has enough experience with symptoms like mine to know what to look for along with Lyme--toward the goal of getting me healthy again.
Thanks for the support. It is helpful, as the medical paperwork and research is as much a burden as the actual symptoms at times.
I absolutely understand what you are saying. So far everything that has happened to you in the medical world -- all your doc's denials, etc. -- is consistent with Lyme. Never mind your symptoms: if the docs react the way yours have, sadly it's a symptom of Lyme. Okay, that was half a joke, but only half.
Anxiety is normal when you've been through what you're still going through, and anxiety is also an effect of Lyme. Double whammy.
I love your doc just from what you say above. Oh that more docs were so enlightened. The good news is, if it's NOT Lyme, she will tell you and do so with reasons, unlike the other docs you've seen. That is still progress, as twisted as that sounds.
And points to your primary care doc who DIDn't call you a head case. I also had one doc out of my 20 before I was diagnosed look at me (I can still see the look in his eye as he was saying this) and said: "I know you are sick, but I don't know what it is." I knew he believed me, unlike the other docs.
You go, girl -- keep us posted! This is progress.
I was told that insurance does not cover IV antibiotics for Lyme Disease and it would cost anywhere from $4 - $6,000 per month although I have met people who had it covered by their insurance. Many doctors only use IV antibiotics if the orals do not help. My oral antibiotics have been covered by insurance.