Originally Posted by TINUVIEL
To the best of my knowledge, it is the responsibility of the health care provider to report a positive test result to the CDC. You are not responsible for any registering, reporting, etc. or anything else of the kind.
Yes, Lyme is a hassle to treat in that it is very, very costly - to the insurance companies. And so for this reason often doctors are under pressure or duress to not diagnose Lyme. I never used to believe in things like that, I used to think all that was a lot of conspiracy-theory nonsense, but not anymore. Not after what I've seen.
If you need a referral, contact your nearest Lyme support group. The closest large Lyme organization I know of is the National Capital Area Lyme Disease Association in Washington, D.C. Many people have had to travel out of state to get competent medical care for Lyme.
Oh I can attest it's very costly. It's funny, the insurance companies have put pressure on the CDC/major medical orgs to say that LD only requires 3 weeks 200mg Doxy, when we know that it doesn't work in patients (works in a lab, but when the spirochetes go into cyst form, no longer effective). The insurance companies say that it's "too expensive" to treat for longer periods of time.
But now that I was given the "standard treatment" twice now, with no real improvement, I've seen 5 (!) doctors, with rounds of tests at each. Only after round 5 have I found a doc worth a hoot,and he does NOT take any insurance of any kind. I cost the insurance companies at least $1k per round of testing, minimum). So that's $5k.
Now I have to pay up front to the Lyme Doc because he won't accept the pittance the insurance companies say is "customary payment". Where are those fees customary? Somalia? I've never encountered a doc who charges the customary amount, even for a cash customer. I don't blame the doc for not taking the insurance; he has to eat and provide for his family after all. But I've paid out of pocket at least $3k, and I continue to pay out the butt for meds:
$198 a month for Cefzil (my share of the cost, which probably cost the insurance co about the same)
$212 a month for various supplements he prescribes to help support me
I'm VERY fortunate that I was able to get 40mg samples of Benicar from the doc (cut them into quarters as I'm on 10mg x 3 daily). This would cost me nearly $200 a month alone if I had to pay for them. The ins co requires me to try EVERY other blood pressure drug on the market and legally certify that none of them worked for me before they'll pay one cent for Benicar (even though the other drugs cannot have the effect we're looking for). It would be irrelevant anyways because the ins co doesn't pay for any "non-standard use of the drug".
I am also VERY fortunate that I have a source for samples of the Tindamax I take; else I'd have to pay over $250 a month for that as well. Again, no payment for "non-standard use of the drug".
Additionally I have lost at least a year and a half work wages due to being sick enough that I can't work.
If I figure I'll be on treatment for 6moths more (probably longer, but I am doing much better than before), this adds up to $2410, and if I didn't have the ability to get samples, it would be $5160. This does not include about $15k in lost wages.
I cost the insurance company probably $250 a month,and that's cheap since they don't cover most of the supplments that I'm PRESCRIBED, not just because I want to take them.
$5k doc fees and tests before finding effective treatment, and $250 a month ongoing treatment ( a pittance really, since they don't cover most of the actual costs). So I cost them at least $6-7k when it could have been easily avoided if they encouraged and allowed proper initial treatment. $1k in testing/treatment at first is alot cheaper than ongoing treatment for a year or two.
And my LLMD says I'm lucky, not being badly off enough to need months of IV meds and/or neurological testing. Major bucks there.
The Insurance companies are such idiots, penny-pinching, but costs them MUCH more in the long run to have me go from doc to doc seeking effective treatment...
If you are of moderate means, or don't have super good insurance and you get LD, you're crap out of luck. It's definitely a disease for a person of means, else you don't get cured.
Sorry for the rant, but it needed to be said.