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SURVEY

Please fill out the CALDA Survey!

Many patients feel distressed because their cases don’t meet the narrow CDC case definition and are not counted. Advocates are continually fighting for recognition of the many symptoms experienced by patients but discounted by “experts.” You can help by filling out this survey. The more people participate, the more compelling the information becomes. CALDA will compile the data and use it when contacting legislators and public policy leaders. We will share the data with other Lyme advocates and report results in the Lyme Times. We will not use your name and personal information.

This survey is for people who have been diagnosed with Lyme disease or another tickborne infection. You may fill out separate surveys for yourself and loved ones. Please supervise any children under age 18 if they want to fill out the survey themselves. Choose the answer closest to the correct answer. It is ok to skip questions that do not apply or if you do not know the answer.

The first six (6) questions provide identifying information for each survey that will help prevent duplication. We will not share any personal information with any third party.

1. Birthdate:

2. Initials:

3. Zip Code:

4. Your City:

5. Your Gender:

Female
Male

6. Your Age:

7. Where did you contract Lyme disease?

8. If you know exactly where you contracted Lyme disease, please enter the county name, state name, and/or ZIP code.

County:

State

Zip:

9. Length of time from onset of symptoms to physician diagnosis of Lyme disease:

10. Number of physicians seen between onset of symptoms and Lyme diagnosis:

11. Do you recall a tick bite?	Yes No	12. Did you initially have an EM (bull's-eye) rash?	Yes No Don't know
13. Did you have another rash or rashes?	Yes No Don't Know	14. If you had a rash, was it observed by a physician?	Yes No Don't Know
15. Did you initially have a flu-like illness?	Yes No Don't Know

16. Of each of the Lyme tests you know you have had, tell us whether test was Positive, Negative, or Borderline (Indeterminate):

ELISA	Positive Negative Borderline	IFA	Positive Negative Borderline
Western Blot IgG	Positive Negative Borderline	Western Blot IgM	Positive Negative Borderline
Lyme Dot Assay (LDA)	Positive Negative Borderline	Lyme PCR - Serum	Positive Negative Borderline
Lyme PCR – Whole Blood	Positive Negative Borderline	Lyme PCR - Urine	Positive Negative Borderline
C6-Peptide	Positive Negative Borderline

17. Were lab tests performed for other tickborne illnesses?

Yes
No
Don't Know

18. If your answer to 17 is Yes, give the test results for the other tickborne illnesses you were tested for.

Ehrlichiosis	Positive Negative Borderline Not Done	Anaplasmosis	Positive Negative Borderline Not Done	Babesiosis	Positive Negative Borderline Not Done

Bartonellosis	Positive Negative Borderline Not Done	Rocky Mt. Spotted Fever	Positive Negative Borderline Not Done	Tularemia	Positive Negative Borderline Not Done

Relapsing Fever	Positive Negative Borderline Not Done

19. Please mark all Lyme symptoms you have had:

Flu-like Symptoms

Headache

Stiff Neck

Meningitis

Malaise (fatigue, sick feeling)

Swollen Glands

Joint Pain or Stiffness

Muscle Pain

Heart Problems

Gastrointestinal Problems

Facial Palsy (Paralysis)

Numbness/Tingling

Loss of Reflexes

Tremor

Seizures

Memory Problems

Chronic Fatigue

Depression, Mood Swings, Irritability

Panic Attacks, Anxiety

Inability to Concentrate

Attention Deficit Disorder

Psychiatric diagnosis

Eye Problems

Ear Problems

Sleep Disorder

Unexplained Hair Loss

Unexplained Weight Loss or Gain

Night Sweats

If you have other symptoms not on this list that have significantly affected your quality of life, you can enter them here

20. Your most disabling symptoms have been/are (choose one):

21. Prior to your Lyme disease diagnosis, were you diagnosed by a physician with one or more of the following conditions? (Select one or more.)

22. Are you currently receiving antibiotic treatment for Lyme disease?

Yes
No

23. How long have you been on antibiotic treatment?

24. If not currently being treated with antibiotics, how long did you receive antibiotic treatment?

25. If you have been treated with intravenous antibiotics (IV), how long was this treatment?

26. With antibiotic therapy, have your Lyme symptoms:

27. Have you ever tried alternative treatments?	Yes No
28. For the following alternative treatments you have used, state whether you found the treatment helpful or not.

Acupressure or Acupuncture	Helpful Not Helpful Harmful Don't Know	Bee venom	Helpful Not Helpful Harmful Don't Know	Diet and Nutrition	Helpful Not Helpful Harmful Don't Know

Heavy metal detoxification	Helpful Not Helpful Harmful Don't Know	Herbs	Helpful Not Helpful Harmful Don't Know	Homeopathy	Helpful Not Helpful Harmful Don't Know

Hydrogen peroxide	Helpful Not Helpful Harmful Don't Know	Hyperbaric oxygen (HBO)	Helpful Not Helpful Harmful Don't Know	Marshall Protocol	Helpful Not Helpful Harmful Don't Know

Rife	Helpful Not Helpful Harmful Don't Know	Sauna or hot tub	Helpful Not Helpful Harmful Don't Know	Silver hydrosol (colloidal silver)	Helpful Not Helpful Harmful Don't Know

Ultraviolet blood irradiation	Helpful Not Helpful Harmful Don't Know	Vitamins and supplements (including salt)	Helpful Not Helpful Harmful Don't Know	Yoga or qigong	Helpful Not Helpful Harmful Don't Know

29. Your current quality of life is:

30. Your current health insurance coverage:

31. What out-of-pocket expenses have you incurred for Lyme treatment thus far?

32. Approximately what percentage of your Lyme medications have been covered by health insurance?

33. Does your Lyme physician accept your health insurance?

Yes
No

34. How far from home do you travel to see your Lyme physician (one way)?

35. Are you presently able to work?

36. If you are presently, or have ever been unable to work due to Lyme disease, how long were you unable to work?

37. Have you ever been on public support or disability due to Lyme disease? If so, for what length of time was it necessary?

38. If you are filling this out for a child, has the child ever required school accommodations or home tutoring because of Lyme disease?

Yes
No

39. If the child has required accommodations, for what length of time were they necessary?

40. How did you find out you had Lyme disease?

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