Monsters in Munchkin Land

For those of you who don't know...finding a Lyme doctor is very difficult. There are very few of them because of the controversy in long term treatments. Once you do find one most people have to travel to another state to see them. A lot of people who see my Dr are from Canada as well. Most Lyme doctors don't take insurance because they could lose their license if they give long term antibiotic treatments. This is because the insurance companies don't want to pay. And the government has made it so easy for this to happen. The current guidelines for this disease are absolutely absurd! People are only allowed a few weeks or a month of medicine. Then they are considered cured. Which if you have had this a long time that is impossible. This bacteria leaves your blood stream and burrows into your body, organs, tissues, brain, muscles, bones...etc. Then it can hide in a cyst form so the antibiotics can not kill it.

So right now I am feeling angry. Angry that in the United States of America people can not get proper treatment for this illness. Angry that I feel like my doctor is against me because I have to pay out of pocket in reality it's not her fault that I have to pay out of pocket.
I am lucky to have a doctor that is in Seattle, 30 min from my home, there are none in Oregon. But she is under a close watch with the insurance companies right now too as she will not let me say I have Lyme. I have all the blood work saying I do have Lyme but I am to say I have "Tick borne illnesses." Lyme is a dirty word in the medical field. Angry that I am "Positive" for Lyme but "Negative" for CDC reporting. Meaning that thousands of cases go unreported each year so the CDC does not look bad for an increasing number of cases. (see picture below)


I am on four antibiotics right now, four vitamins and three Lyme specific immune system boosters. Got all of that? I have 23 pills I take a day and one shot glass of neon yellow goo. The yellow goo is $1700 a week. Thank God my insurance only charges my $34.
It is an awful feeling to live each day not knowing what your future will be, how long will I have to take meds, can I continue to pay for it out of pocket. I have turned in everything to my insurance but it is up to them if they want to reimburse me.

Anyways...I just needed to vent. So many people don't understand how bad this disease is and how hard it is to get treatment. I have met hundreds of people on line. All these people are having the same problems that I have. Some are worse and some are better. It depends on if you can get treatment and how your body responds to it.

So it is pretty bad when you feel like you would rather have a cut and dry disease that has no controversy about treatments. And people are willing to help you get better. The feeling of unknown is the worst feeling!