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As her Mom, I am supposed to be able to fix this, right? I try to stay positive, but sadly Heather and everyone who knows me can see my concern. Lyme disease sucks.
There, I said it. Sometimes you just have to let it out.
I hate that damn tick.
Hate is such an awful word, so I will just say that the I really, totally, without a doubt, 100%, despise/detest ticks.
Heather's restaurant is closed for a few weeks, so she is home for now. Just seeing her calms me down a bit. However, it is soooooooooooooo hard to see her daily struggle with fatigue and nerve pain. Her nerve pain is getting worse, but that was somewhat expected with the cold weather.
Heather is adding another doctor to her team - a neurological opthamologist. Heather's perfect pre-lyme vision seems to be not so perfect. As a precaution, they want her to see this specialist. In addition, we are talking with her doctors in NY while looking to add a Lyme Literate Medical Doctor (LLMD) in the DC area.
I am scouring the internet for answers, a cure, and the best LLMD in our area. As with so many diseases, there isn't enough research for the disease and there isn't a cure. In addition, the testing and treatment options aren't reliable. The CDC and the IDSA set the guidelines that the doctors and insurance companies must follow. Bottom line - the Lyme Literate Medical Doctors (LLMD) do not accept insurance.
If the LLMD takes insurance, the insurance company reimbursement policies are dictating the lyme treatment that a patient will get. Seems pretty stupid now doesn't it. The doctor spends more time trying to get money from the patient and/or insurance company and less time helping the patient and keeping up to date with the latest and greatest treatments.
The insurance companies don't want to pay for prolonged treatment, lengthy doctor appointments. etc. The insurance companies follow the awful guidelines set by the CDC which are not the best for the patient. Just typing that statement infuriates me. ARGGHHHH
Faced with this bureaucratic BS, a good LLMD usually doesn't take insurance. They want to treat the patient with the best treatment available and let the patient then deal with their insurance company. If a patient is lucky, some of these costs may be covered out-of-network.
This method leaves it up to the patient to fight with the insurance company to reimburse them for the treatment the doctor is giving. I know it sounds like a scam on the doctor's part - but it isn't. These specialists are dedicated to helping chronically ill patients, but sadly they are running a business too. Something has to give. Guidelines need to be updated which hopefully will have a trickle down/up affect that financially helps Lyme patients.
It is so hard to share so many personal things. We are sharing and telling her story in hopes that it may save someone from this awful journey. Awareness is key, quick and correct treatment is critical.
On a much lighter note, Heather and I spent last Saturday making homemade bread from my great-grandmother's recipe. It takes about 4 hours, but worth every minute that I get to spend with Heather. Punching down yeasty dough is so therapeutic. Having a flour fight is fun too. Let's not get me started on how delicious this bread is with good ol' salted butter. Yummy. I try to avoid gluten, not because of allergies, but I must admit I do cheat when I make this bread.
xo
Lisa
