As I continue to feel so much like my old self I can't help but think about so many of those whose lives are changed forever because of Lyme Disease. I am actually quite lucky!
Like in the film "Under Our Skin" I have watched many home video's of people who have documented their children and other loved one's battle this horrid disease. Some get better, some still struggle daily to survive and others lose their lives. There are still people yet to be diagnosed and those of whom can not afford the high cost of treatment and are forced to slowly waste away until the end comes. This breaks my heart.
The toughest part is knowing that Lyme does exist along with coinfections and yet Dr's in most states are not allowed to treat it aggressively, the fight for legilation for proper treatment (including testing) and new guidelines (especially here in Massachusetts) for correct treatment are taking too long. Most insurance companies don't cover treatment and for many that means death.
We were lucky enough (if you can say that) to have some money set aside to get treatment from a Lyme Literate Dr out of state and be aggressively treated. That money is now gone and we have to use credit cards to get treatment. My husband should have had a direct PICC line of antibiotics because of his severe case but insurance would not pay. We could not afford $10,000 or more monthly for this treatment. Thankfully with an aggressive treatment plan(9 months so far)of daily medications and supplements his symptoms of not being able to speak and walk are gone. If he was never diagnosed he most likely would have ended up a vegetable in a wheelchair with a diagnoses of MS or Lou Gehrigs (which his primary care Dr did think it was).
He was tested many times here in MA for Lyme and none of them showed up positive. Only when he got the Western Blot test from IGENEX in CA did it show up. This is why correct testing is so important. Why Dr's here in MA don't offer you the Western Blot test is beyond me.
So this fight continues. A fight to get legilation passed, a fight to have insurance companies help pay for treatments and a fight to get this disease recognized as serious because it is more prevalent than AIDS here in the United States.
LYME IS REAL AND IT KILLS, please take time and watch personal stories online. Learn how we can come together to defeat this.
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