Friday, May 17, 2013

May Day 17 Lyme Awareness


  1. Conjunctivitis, pink eye like symptoms, irritated eye(s)
  2. Visual ‘floaters’
  3. Forgetfulness
  4. Arthritis
  5. Stiffness in major joints
  6. Swelling of major joints
  7. Low body temperature
  8. Night sweats
  9. Tinnitus (ear ringing)
  10. Sore ribs


  1. Most Primary Care Physicians will not diagnose or even test for  LD. If you believe you have LD, the BEST thing to do is find an ILADS doctor.
  2. You, and all patients really, should not be afraid to be a self advocate.
  3. Only you know how you feel. If a doctor tells you otherwise, fire him/her. (After all, we do hire them for skilled labor.)
  4. Remember, the blood tests for Lyme are highly inaccurate, so even if you have done them and they come back negative, it doesn’t mean you're in the the clear.
  5. Expect to pay out of pocket. At the very least for the appointments. Insurance may still cover some of the meds.
  6. It will be very helpful to find out about community resources in your area. Especially if you don’t have income or very little.
  7. I applied for disability through Allsup and though I was approved in record time, I still recommend you use them or a lawyer if you are applying. (Also, if you use Allsup, tell them I sent you [Erin Hartnett]. They send checks for referrals. It would be nice to have some extra cash.) I applied in Oct and was awarded in March. Don’t be afraid to call and ask about anything.
  8. Keep records of every bill and every phone conversation. Especially when dealing with government benefits. It is their job to deny us to save money. You will likely get denied but if you have good records, you might qualify for free legal aid. I did and my medicaid went through that week and my food stamps got reapproved.
  9. Don't give up.
  10. Don’t give up.

I realize that these are less about the science and politics surrounding LD, but I don’t feel well enough to research today and tomorrow we start on co-infections. (most of this month was started in April)

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