Saturday, June 22, 2013

Why we need financial support

I've been wanting to write a couple of different entries lately, like "What is Lyme Disease," or "What do I need to do if I've been bitten by a tick?" However, this one popped out at me today as important because it might not be obvious why the insurance company won't pay for the treatment that Lyme patients so badly need. Over the years we have been given multiple reasons by doctors and insurance companies. Here is a list:

1. Lyme disease does not exist in North Carolina. (wrong answer!)
2. If you indeed have Lyme disease, the only treatment you need is two weeks of Doxycycline. You will be fine once that is administered. (not necessarily)
3. Chronic Lyme disease does not exist. There is no proof that it does. (the research is there but ignored)
4. A positive blood test is the only way to properly diagnose Lyme disease. (you also need to be evaluated for symptoms)
5. If you didn't have a bulls-eye rash, you don't have Lyme. Moreover, if you did not see the tick that bit you, you can't contract Lyme.(only 40% of Lyme patients have had a bulls-eye rash)

I'll try to address the reasons that affect my case quickly. Otherwise we could be here all night :-)

Backstory: I got into a nest of nymph/baby ticks on a hiking trip here in NC. I never saw the tick that bit me, nor did I get a bulls-eye rash. When I got sick 6 months later with typical Lyme symptoms (remember, I had  no hard evidence), my doctors brushed it aside. My test was negative. I don't remember if I did two weeks of Doxy or not. At that point, 16 years ago, a negative test meant NO HELP.

My mom took me to any doctor who would listen. The answer was always the same: your test is negative, and besides, this disease doesn't exist in North Carolina. The doctors were not kind. They wrote in their notes that Mom was seeking attention for herself. The reality was that she was watching her teenage daughter get sicker by the day.

It took 8 long years to get a diagnosis. I graduated high school. I graduated from Meredith College. By that time, I was married and was so sick that i couldn't hold a full time job. Eventually, I had to quit working. My mom and Mema convinced me to go to a doctor they had found, and I was immediately diagnosed. I did oral antibiotics regemines that to keep the illness under control. Over the last two years, however, that stopped helping for various reasons. The only choice I had was to do IV antibiotics for 9 months.

So here's the question: Why does this bright young couple need to raise $50,000 dollars? (Do take note of our very cute niece :-)

Because 16 years later, very few things have changed with doctors and insurance companies! There are small signs that more doctors are listening, but the insurance companies aren't. There is a tiny possibility that they will pay for 2 weeks of IVs, but it is more than likely that they will pay nothing, and the IV meds are very, very expensive. They don't cover doctors visits, and they don't consider that we drive out of state to get the best care. Bottom line, they make the decisions, and when it comes to Lyme disease the answer is NO. I don't say this for you to pity us or put a guilt trip on anyone. However, the reality is that we can't pay for this on our own. We need help from our family, friends, and the community around us. PLEASE DONATE TODAY! It will make such a difference in our fight against Lyme.

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