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Insurance coverage when “negative”

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Lyme Disease
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Posted 1/4/2020 5:11 PM (GMT -5)
I’m finishing up my ABX in the next week with zero changes (good or bad). My doctor had said if there was no change he would want to move onto IV. He said having done oral ABX would help make a case with Aetna that I’ve been under his care and need stronger treatment (IV). My partner and I have split up and I’m also currently looking for a new apartment, but I’m nervous about my finances. Even the extra couple hundred per month I’ll no longer be saving might be rough. Did anyone ever move and share with roommates that you were in treatment for Lyme?

What was your experiences with insurance coverage on IV when you were CDC negative?

Thanks all!
Posted 1/4/2020 6:35 PM (GMT -5)
I admit I'm not the most knowledgeable about the pharmaceutical route for Lyme treatment, but does zero changes from 6 weeks of one oral antibiotic actually indicate that IV antibiotics are called for? I hope some folks can weigh in on that. It does not sound like an appropriate treatment strategy based on what I've read and experienced.

I'm so sorry for what you are going through and the difficulties and complications that have arisen for your life situation. The right roommate situation might be nice in the sense that someone is more likely to be around to check on you during harder periods, but of course you'd want to find the right folks who will respect your needs. I wonder if you could find someone else who also has a chronic illness, perhaps by advertising through a local CFS/ME or Lyme support group?

I know it's absolutely ridiculous how difficult it is to manage this disease financially (and otherwise)!
Posted 1/4/2020 8:23 PM (GMT -5)
Are you still on just the one antibiotic (Ceftin) and been taking it for 6 weeks?


He really should look at adding another one - ie maybe an antimalarial to target Babesia or one to target Bartonella.

If not - maybe a new LLMD is in order.
Posted 1/5/2020 12:51 AM (GMT -5)

saraeli said...
I admit I'm not the most knowledgeable about the pharmaceutical route for Lyme treatment, but does zero changes from 6 weeks of one oral antibiotic actually indicate that IV antibiotics are called for? I hope some folks can weigh in on that. It does not sound like an appropriate treatment strategy based on what I've read and experienced.
I'm so sorry for what you are going through and the difficulties and complications that have arisen for your life situation. The right roommate situation might be nice in the sense that someone is more likely to be around to check on you during harder periods, but of course you'd want to find the right folks who will respect your needs. I wonder if you could find someone else who also has a chronic illness, perhaps by advertising through a local CFS/ME or Lyme support group?
I know it's absolutely ridiculous how difficult it is to manage this disease financially (and otherwise)!


Thank you! I think part of it is maybe my ID (who is fairly LL but not certified LLMD) wants to take the IV route sooner due to the neurological symptoms that have been going on for at least a year and lack of change from the ABX. Nothing worse, nothing better. My option for living at the second is with some very caring and supportive coworkers. I’ll definitely check with my Lyme support group if they know of anyone! Maybe Facebook? Your chronic illness/Lyme roommate matchup is a good idea I hadn’t thought of.
Posted 1/5/2020 1:08 AM (GMT -5)

Girlie said...
Are you still on just the one antibiotic (Ceftin) and been taking it for 6 weeks?

He really should look at adding another one - ie maybe an antimalarial to target Babesia or one to target Bartonella.
If not - maybe a new LLMD is in order.

Hi Girlie! How are you?! I’m still on just the one and nearing the 6 week mark. I have my follow up scheduled to discuss next steps. I’ll ask him if we can attempt that route. Although I came up negative for co-infections (Tested through Quest diagnostics) I really do think I have one—with my air hunger, recurring low grade fever, and Petechiae. It’s possible that maybe he’s nervous that with my worsening neurological symptoms so he’s jumping to IV? I had folks in my support group say they wish they did IV sooner, but it’s so hard when there are just so many experiences and different doctors advising. What duration of oral ABX would you say one might take with no change before taking the IV route?

I’d love to see an official LLMD or Dr J. Unfortunately with my finances and now finding a new home it’s cutting it close money wise. I’m hoping the ID makes any sort of progress or change since he takes my insurance. if not and I see no change my next option will be to somehow to make my way to LLMD or Dr. J.

I appreciate your responses as always!
Posted 1/5/2020 1:37 PM (GMT -5)
As a general rule somewhat related to this post- Most insurance wont cover lyme treatment's clinical visits no matter what......even if laws exist. But with insurance usually the right hand does not talk to the left. Meaning your clinic Dr wont be covered but Rx meds still will be- very common scenario.

But if you do rack up years and high Dr expenses in a state with a lyme treatment law getting a lawyer and or the state commissioner involved can result in a reimbursement check for you. I know people who did this. Iv's are complicated though - where it was done ect.
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