Patient Support

Getting the help you need

Support Groups

Find your state on-line support group in Yahoo Groups

Financial Assistance:

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need.

http://www.lymetap.com/

The United Healthcare Children’s Foundation is a 501(c) (3) charitable organization that provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan. Grants of $5000 are available.

See http://www.uhccf.org/about/

Symptoms and Doctor Prep

Click here to view or print out the Symptoms Checklist

Many doctors treating Lyme and tick-borne diseases suggest their patients keep track of their symptoms on a monthly calendar chart.  This allows one to show a reliable history of symptoms without resorting to memory at the time of the office visit.  It also allows one to track progress over several months or longer by laying out the charts side-by-side.

Links below are some examples.

Monthly Chart with pre-printed symptoms

Monthly Chart without pre-printed symptoms

Month calendar format

Prepare for Lyme Doctor Visit

You must be a full partner with the physician in obtaining and understanding medical care for Lyme disease and other tick-borne illnesses.

1. Symptom list: On a large paper list symptoms. Across the top, number days 1 – 31. Each night rate each symptom on a scale of 1 through 5, one being “absent” and 5 being “severe.” Sample charts are above.

2. Medications: keep a list with exact dates of starting and stopping. Also possible reactions, herxes*, feeling better, etc.

3. Bring copies of any lab tests, for both routine and tests for other tick- borne diseases, e.g. Babesiosis, Anaplasmosis, Ehrlichiosis, Rocky Mountain Spotted Fever.

4. For first visit with a new doctor, bring a more extensive summary of previous treatment.

5. For subsequent visits, bring a one paragraph summary of previous visit to remind doctor, who has seen many patients since then.

6. Questions for the doctor: write them out; give a copy to your doctor, check off answers on your copy.

7. Emphasize your biggest concerns and ask your doctor about the best way to address this issue.

8. Ask your doctor about the best way to communicate between visits. Could you call or email or fax him or staff with questions or concerns. Many doctors have a website for communications.

9. Bring an advocate to the meeting, especially if you have trouble communicating or taking notes.

 

* Herx or Herxheimer Reaction occurs when a patient gets worse when starting or changing treatment. Thought to be caused by the products of dying Lyme disease bacteria (spirochetes.)

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