For my next trick, a PICC…and a fight

Where’s my Lymie Achievement Badge? I am officially in an insurance battle.

Since my last update, my doctor has decided it is time for me to get a PICC line and receive intravenous antibiotic treatment. I have been debilitated by Lyme Disease for 21 months. My progress has stalled (again). I am still experiencing neurological symptoms. I have been on MANY different oral antibiotics, tried injected antibiotics, and pulsed oral antibiotics. It’s time to step up our game.

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PICC line: a visual aide!

I am to get the PICC line as soon as possible, and have it for 8 weeks, during which I will administer my own IV antibiotics (after being taught by a visiting nurse) four days per week. PICC lines must be kept dry, so I will need a special cover for the shower, and swimming probably isn’t worth the risk/hassle.

My insurance company at first seemed like they would cover 4 weeks of treatment, but has since decreed that the treatment is not medically necessary, and are denying to cover it at all. Not a single cent. Without insurance coverage, this treatment will cost a minimum of $3,000. Our out of pocket Lyme spending total at this point, pre-PICC is $10,000. So you bet your bippy I’m going to fight.

For people with persistent or chronic Lyme Disease like me – especially with neurological issues – IV antibiotic treatment can help you really get over the hump and start to fell well again. I am very fortunate to have found my way to the Dean Center and received a referral for a PET scan of my brain. My scan results are in, and show that I have hypometabolism in my temporal lobes.

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PET scan day! I got injected with radioactive material, wrapped up like a mummy, and lived to treat myself with a yummy snack!

Hypometabolism cannot be detected by an MRI. It tends to show up in Lyme patients with neurological issues who are lucky enough to get a PET scan (which are not as readily accessible as MRIs). Hypometabolism in the temporal lobes accounts for short-term memory loss, which has been a major struggle for me throughout my illness. The bad news is, hypometabolism has been found to be a precursor for Alzheimer’s. The good news is, the Dean Center has had some success eradicating the hypometabolism in Lyme patients with IV antibiotics.

As I type this, my PET scan results are being sent to my insurance company as proof that a PICC line and IV antibiotics are medically necessary. I’m not sure I can fully exhale until I hear back. If protecting my brain, and preventing Alzheimer’s doesn’t count as medical necessity, then what in the fresh hell does?