For my children, it is a different story. It is difficult to find someone willing to treat a complex, chronic pediatric case. We've had to travel across states for care, and this care is never covered by insurance. And even for myself, beyond typical care, to find appropriate care in a specific discipline (neurology, psychotherapy) is nearly impossible.
Lyme disease is a very political disease. It is a very difficult life to live, a life of pain, a life of dealing with the politics of care and sometimes with not only doctors but even family members who may not believe that your pain is real. Families lose their incomes. Families split up from the stress. Families lose their homes.
What I wish for you to know is that ticks do not have to be on you for 24-48 hours to transmit disease. Ticks can transmit upon attachment - even before attachment according to the most current research (See 'No Picnic' by PJ Langhoff, 2013). If you are sick and think you have Lyme disease, even if you have never seen a tick on you, it is critical for your doctor to treat the symptoms simply because we live in an endemic area and the chances are likely that you were bitten by tick. It is easy to get bitten by ticks. In fact, a nymph tick is as small as the period at the end of this sentence. These can fool even Lyme advocates like myself who search their kids neurotically every night for ticks - just a couple weeks ago my daughter had nymph tick on her cheek, and I attempted to brush this piece of "dirt" off several times before I realized it was stuck on her face and actually a tick. Lastly, if you do find a tick on you, get the tick tested! Getting a tick tested is a reliable way to find out whether or not you've been bitten by an infected tick and need to be treated aggressively. The testing for us humans are, at best, highly unreliable. If you are sick and the test comes up negative, it does not mean you do not have Lyme disease. Legislation is starting to be passed in our neighboring states requiring doctors to disclose this to patients. Lastly, if you do find yourself diagnosed with Lyme disease, join a support group. Your network is invaluable for your recovery. The best thing you can do from this day forward is wear your tick repellant every time you go outdoors. Shower immediately after spending time outside, and check yourself nightly for ticks. Lyme disease, and the suffering that comes with it, is real. Protect yourself and most importantly, your kids. All it takes is one tick bite for a lifetime of debilitating illness.
Thaiadora Katsos Dorow
For more information, please see lymedisease.org, TBDA.com, UnderOurSkin.com, www.drjoneskids.com or my own personal facebook page https://www.facebook.com/WhatsTheBigDealAboutLyme?ref=hl