• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Lyme Laws State to State

Tiger Lily 813

Senior Member
Messages
173
Hi all,
I'm trying to make a decision about if I am moving back home or staying in the city. I saw that it was just passed that long term antibiotic treatment is now allowed in NY state. Which makes me want to fight to stay. Home is in Pennsylvania.

Are there any other states that are now allowing long term antibiotic treatment?

I know any LLMD will DO it, but I want it to be insured.

I am newly diagnosed and if I need this treatment I don't want to move somewhere that will increase my treatment costs. Thanks!!
 

Tiger Lily 813

Senior Member
Messages
173
Also wondering if I would move to say New Jersey, but still see doctors in New York, would I be included in this NY law?
Thanks!
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
I had no idea there were states where it wasn't allowed. WTF? My state (VA) has a law that says people have to be told that a negative lyme tests doesn't necessarily mean you don't have lyme, so I'm guessing it is allowed here.
 

Tiger Lily 813

Senior Member
Messages
173
@vamah, it's not that it is not allowed... but it is not covered by insurance companies. So if a doctor takes insurance for appt costs, their options for treating the condition are limited. If a doctor does not participate with insurance ("Out of network" type) they have more freedom in prescribing consequence free. Some docs have even had their licenses taken away if they do not abide by this.
Additionally, the antibiotics themselves would not be covered by insurance if they are used long term. I recently read that this changed in NY state this month. If anyone has a more in depth article about what this means for patients, please share!
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@vamah, it's not that it is not allowed... but it is not covered by insurance companies. So if a doctor takes insurance for appt costs, their options for treating the condition are limited. If a doctor does not participate with insurance ("Out of network" type) they have more freedom in prescribing consequence free. Some docs have even had their licenses taken away if they do not abide by this.
Additionally, the antibiotics themselves would not be covered by insurance if they are used long term. I recently read that this changed in NY state this month. If anyone has a more in depth article about what this means for patients, please share!

@vamah

For me the problem would be getting insurance coverage for IV antibiotics for more than a month.

Sushi
 

Tiger Lily 813

Senior Member
Messages
173
Wow, that's nuts. This is not the case in virginia or washington dc.
Yes I think it's extra asinine that antibiotics can be prescribed long term & covered by insurance for other random things, ie. acne, chronic uti inflammation, etc, but not for lyme! There's a lot of time spent on this in the Under My Skin doc. Lots of info on the origin of how this corruption came to be. It's more to do with the definition of Lyme not being recognized as persisting/chronic.
I'm still surprised though. Because usually doctors in the US are heavy handed with pharmaceuticals, for better or worse.
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
I'm not surprised at insurance companies refusing to cover things, I've had that issue myself when I was with kaiser many times. What surprises me is that it would be illegal to cover it in an entire state. At least I had the chjoice of switching to different (albeit,more expnsive) insurance where my doctor can treat me using his best judgement.
 
Messages
15,786
In addition to the insurance issues, doctors prescribing long-term antibiotics can be subject to persecution for it. The laws are primarily to protect those doctors, and apparently are most common in the states where Lyme is more prevalent.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Insurace company denied my last refill for azithromycin. Said I exceed the acceptable amount allowed for 6 months. Dr was suppose to send in validation to the insurance company but still jot approved. Some flunky in a cubicle holding my health hostage. So in illinois abx are restricted under bcbs.