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John's Story

Letter to Rosie O'donnell describing life with Lyme Disease

Dear Rosie:

My brother also has Lyme disease. His story is unusual in that it took us over 4 years to get the proper diagnosis, and in that time it has destroyed his neurological functions in the form of ALS (Lou Gehrig's Disease. The doctors who are supposed to know how to take a test took blood each and every time without first administering any antibiotics.

Once it was done with with antibiotics present we received and overwhelming positive test. Unfortunately, because this has taken on the ALS symptoms he is now completely paralyzed and needs 24 hour a day care. My parents are 80 and 74 respectively, and are finding it impossible to do this on a regular basis since we cannot get any help from Medicare.

The state will not allow us to apply for Medicaid because my brother has Medicare. Medicare does not allow any more than 2 hours per day, 2 days a week home care. He needs 24 hour a day 7 days a week home care.

Please become the spokesperson for this devastating disease. It is slowly killing my brother (who is only 40 years old -- in the prime of life) and we are not able to even stop his disease from going further, much less hoping for a reversal of the effects it has had on his nervous system. Thanks for listening.

Anne O'neill

New Jersey

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