50 Questions

Here's the questions from the survey, so you can see exactly what I asked. Apologies for some funky formatting... hopefully it makes sense anyway.

BTW the survey is still open until this Sunday, July 1 at noon. Please feel free to take it if you haven't done so already and would answer "Yes" or "No, but I strongly suspect I have it" on Question 1.

1. Do you have or have had a chronic/late stage lyme diagnosis or a Multiple Chronic Infectious Disease Syndrome (MCIDS) diagnosis from a licensed medical practitioner? (Please note that if you answer "No, I am pretty sure I don't have this" You'll be sent to the end of the survey. I appreciate you being willing to participate, but this is specifically geared toward those with either a firm diagnosis or a strong suspicion of having lyme/MCIDS.)

 

Yes

No, but I strongly suspect I have it

No, I am pretty sure I don't have it

 

 

2. What other diagnoses did you get for your lyme/MCIDS symptoms prior to getting the lyme/MCIDS diagnosis?

Fibromyalgia Chronic Fatigue Symdrome Multiple Sclerosis ALS/Lou Gherig’s Disease Parkinson's disease Alzheimers Lupus Autism One of the various forms of Arthritis Cancer Heart disease Psychosomatic illness ("It's all in your head") None, Lyme/MCIDS was my first diagnosis I still don’t have a diagnosis

Other (please specify)

3. How long do you believe you have you had lyme/MCIDS? Not sure Less than a year 1-2 years 2-5 years 5-10 years 10-20 years longer than 20 years     4. For how long has your lyme/MCIDS been diagnosed? Less than a year 1-2 years 2-5 years 5-10 years 10-20 years longer than 20 years     5. For how long have you been actively treating your lyme/MCIDS? I’m not now and have never treated it Less than a year 1-2 years 2-5 years 5-10 years 10-20 years longer than 20 years     6. How were you diagnosed? (Note: you can look here for more info about this: http://www.cdc.gov/mmwr/preview/mmwrhtml/00038469.htm Please don't stress about this; "positive, but I'm not sure..." is a fine answer to this question!) definitely a CDC positive blood test positive, but I'm not sure if it would be considered CDC positive positive, but definitely not by CDC standards Blood culture test Clinical diagnosis based on symptoms I had a definitive bullseye rash after a tick bite Other (please specify)     7. If you’ve had a positive blood test, did you get any negatives before you got a positive? I haven’t had any blood tests The first one was positive I had negatives before my positive I’ve had blood tests run, but never had a positive       8. What co-infections (other tick borne illnesses) do you have? Babesia Bartonella Mycoplasma Erlichia Anaplasmosis Colorado Tick Fever Rocky Mountain Spotted Fever Tick Borne Encephilitis Tularemia Other (please specify)   9. Which of these symptoms do you have or have had in the course of your illness? General body aches Rashes Headaches Joint pain Stiffness Difficulty standing or walking Numbess anywhere in the body Tingling sensations Itchiness twitching or spasms paralysis Exhaustion Insomnia Lack of energy Lack of motivation Lack of ability to concentrate depression Sharp pains “Lyme rage” emotional oversensitivity brain fog/lack of clear thinking muscle weakness lack of coordination air hunger/shortness of breath lack of sex drive lack of appetite weight loss/inability to gain weight weight gain/inability to lose weight hyper sensitive to touch sound sensitivity light sensitivity cold intolerance heat intolerance night sweats hot flashes burning sensations nausea seizures blacking out light headedness dizziness vertigo ears ringing ears “stuffed” feeling partial or complete loss of vision partial or complete loss of hearing heart pounding or racing chest pains Other (please specify, and put one on each line)     10. What organ or system damage do you have that you believe to be related to lyme/MCIDS or the treatments you have done for it? None that I am aware of Not sure Heart Brain Joints Liver Kidney Gall bladder Other (please specify)     11. Over the last 6 months, how compromised has your life been? My life is functionally no different than before I got lyme/MCIDS. I have some reduction in capacity, but it is minor. I have noticeably compromised life, but can still function pretty well most days. I have a significantly compromised life and don’t function well most days. I rarely have days when I can function. I am essentially bedridden.     12. Which of the following therapies have you used for your treatment, and how helpful have you found them to be? Have not tried unhelpful somewhat helpful helpful very helpful Antibiotics   Pharmaceutical  antifungal and  parasite treatments   Herbal anti-microbials   Herbal remedies to support treatment   Cowden protocol   Marshal protocol   Rife machine   Homeopathics   Essential Oils   Infrared Saunas   Fasting and other cleansing techniques   Vitamin C/Salt protocol   IV Vitamin C   Colloidal Silver   Hydrogen Peroxide therapy Other (please specify)     14. If you have taken pharmaceutical antibiotics, what types have you taken and how helpful do you believe they have been for you?   haven't tried not at all helpful somewhat helpful helpful very helpful   Oral Ceftin   Oral mepron   Oral malarone   Oral doxycycline   Oral Flagyl   Oral zithromax   Oral clindamycin   IV rocephin   IV ceftriaxone   IV penicillin G potassium aqueous   IV efotaxime   IV doxycycline Other (please specify) or Comments?     15. What supportive therapies and techniques have you tried in conjunction with your main treatment?   haven't tried not at all helpful somewhat helpful helpful very helpful Massage   Cranial sacral therapy   Chiropractic adjustments   acupuncture or acupressure   cleansing/detoxing   fasting   energy healing   essential oils   talk therapy   art therapy   music therapy   co-counseling or other peer support techniques   having a support group online   having a live support group   meditation   yoga   infrared sauna or mats   hyperbaric chamber therapy   regular exercise   dietary changes Other (please specify)     17. Since you’ve been treating your lyme/MCIDS, how much would you say you’ve improved? I am not treating it I’ve gotten worse I have no improvement I’ve seen minor improvement (20% better) I’ve seen clear and significant improvement (50% better) I’ve seen tremendous improvement (75% better) I consider myself cured I have periods of remission, but don’t consider myself cured      18. Since you’ve been in treatment, have you ever experienced a period of remission? Yes No Not sure I've never treated     19. If you have had a period or periods of remission and are now treating again, how long was your longest remission period ever? If you are currently in remission, please include this current period in your answer, providing info about how long you have been symptom free. I've never had a period of remission. less than a year 1-2 years 2-5 years 5-10 years longer than ten years       20. Before you got sick, how would you best characterize your philosophy on medicine? I had a lot of faith in the conventional (allopathic) medical system and followed my doctor’s advice. I believed strongly in natural healing and rarely visited a regular doctor. I put the largest amount of faith in spiritual and/or energy healing techniques. I used a wide range of healing techniques and was oriented toward integrative medicine. I mainly felt lost and confused when it came to medicine. Other (please specify)     21. How would you now characterize your healing philosophy? I have a lot of faith in the conventional (allopathic) medical system and follow my doctor’s advice. I believe strongly in natural healing and rarely visited a regular doctor. I put the largest amount of faith in spiritual and/or energy healing techniques. I use a wide range of healing techniques and was oriented toward integrative medicine. I mainly feel lost and confused when it comes to medicine. Other (please specify)     22. How optimistic are you about making a full recovery from lyme/MCIDS? Very optimistic Somewhat optimistic I really don’t know Somewhat pessimistic Very pessimistic     23. Do you believe herxing is necessary to get well? Yes, it's a necessary evil Probably Not sure No, but I think we get well faster when we herx Not at all; herxing means you are pushing too hard Other (please specify)     24. On average, and not including your doctor’s appointments or testing, how much does your monthly treatment regimen cost? (Please answer this to the best of your ability taking into account what any insurance coverage handles. In other words, roughly how much do you think your treatment regimen costs, regardless of who is paying the bills?) Nothing; I am currently not treating Less than $300/month $300-1,000/month $1,000-2,000/month over $2,000/month Comments?     25. On average, how much do you spend each month on doctor or other licensed medical practitioner appointments? (Include in this emergency room visits, and again, please estimate the actual costs, regardless of who is paying for them.) nothing; I am currently not seeing any practitioners less that $200 $200-500 $500-1,000 $1,000-2,000 over $2,000       26. Over the life of your illness, please provide a rough estimate of how much testing for your lyme/MCIDS-related concerns has cost. Again, try to include actual costs, regardless of who paid the bills. less than $1,000 $1,000-5,000 $5,000-10,000 $10,000-20,000 $20,000-50,000 over $50,000       27. Have you involuntarily lost insurance coverage for a reason other than changing jobs during the time you have had this diagnosis? Yes No Didn't have it to lose Comments?     28. Have you ever been denied an insurance claim (or denied payment for part of a claim) related to your lyme/MCIDS diagnosis? Yes No I don't have any coverage       29. How many medical practitioners did you see before you got what you believe to be an accurate diagnosis? I don't think I have an accurate diagnosis. One; we got it right with the first practitioner 2-4 5-8 9-12 13-16 more than 16       30. Have you ever been denied care by a medical practitioner or hospital (including the emergency room) and suspected it was because of your diagnosis? Yes No Not sure       31. How many medical practitioners are you currently seeing? none 1 2-3 4-5 more than 5       32. If you do have a lyme literate practitioner, what type of practitioner are they? I don’t have any lyme literate practitioners helping me MD (medical doctor) DO (doctor of osteopathy) ND (naturopath) NP (nurse practitioner) Psychiatrist Other (please specify)     33. Do you believe that your lyme literate medical practitioner has ever been harassed for treating lyme patients? I don’t have any lyme literate practitioners helping me Yes, my MD (medical doctor) Yes, my DO (doctor of osteopathy) Yes, my ND (naturopath) Yes, my NP (nurse practitioner) Yes, my psychiatrist No, none of them have ever been harassed as far as I know       34. If you have a lyme literate doctor, how far do you travel to see them (one way)? (If you have more than one, please answer for your main LL practitioner.) Less than 50 miles 51-150 miles 151-500 miles greater than 500 miles I don’t have a lyme literate doctor       35. How many times have you gone to the emergency room for lyme/MCIDS related concerns? Never Once 2-5 times 6-10 times 11 or more times       36. Do you remember getting any tick bites around the time you believe you contracted lyme/MCIDS? Yes No     37. Did you get any kind of rash around the time you believe you contracted lyme? Yes; it was a classic bullseye. Yes, but it wasn’t a bullseye. I don’t remember any rash at all.     38. What is your best thinking on how you got lyme? From a tick bite Sexually transmitted In the womb or being breast fed From another kind of insect bite I have no idea Other (please specify)   39. When you first got sick, were you treated in any way? No; we didn't know what it was No; I got sick so gradually, we didn't realize I needed it Yes, I had antibiotics as prescribed by my doctor Yes, I did some other type of treatment       40. What factors cause you stress related to your illness? (Please indicate how stressful.)   not stressful just a little stress some stress significant stress extremely stressful   The symptoms themselves   Treatment fatigue: after many months of treatment, not getting better   Lack of good medical support   Concern about the politics of lyme treatment   Dealing with insurance, disability or other programs   Family/friends disbelieving your diagnosis   Strain on my personal relationships   Concern about money   Sense of isolation   Frustrations related to loss of capacity to work or otherwise contribute Other (please specify)     41. What factors have helped you the most on your healing journey? (Please indicate how much they have helped.)   I don't have this. This hasn't been helpful. This helps a little. This helps a lot. This is essential to my healing.   Having competent medical care.   Having a strong social support network.   Family support.   Having a formal support group of other patients that is online.   Having a formal support group of other patients in my local area.   Having a strong spiritual practice or set of beliefs.   Having a good therapist or other mental health support.   Reading books and articles about Lyme/MCIDS.   Reading people’s personal stories about living with and healing from Lyme/MCIDS. Other (please specify)     42. What books, if any, have you read about lyme/MCIDS and how helpful were they?   haven't read not at all helpful somewhat helpful helpful essential reading   Rosner's "The Top 10 Lyme Disease Treatments"   Rosner's "Lyme and Rife Machines"   Buhner's "Healing Lyme"   Singleton's "The Lyme Disease Solution"   Strasheim's "Insights into Lyme Disease Treatment"   Weintraub's "Cure Unknown"   McFadzean's "The Lyme Diet"   Singleton, et al's "Recipes for Repair"   Waisbren's "Treatment of Chronic Lyme Disease"   Rosner's "Four Immune Supporting Supplements..."   William's "Nature's Dirty Needle"   Bean and Fein's "Beating Lyme"   Makris' "Out of the Woods"   Vanderhoof-Forschner's "Everything You Need to Know..."   Thum, "Healing Lyme Disease Naturally"   Schaller and Mountjoy's "Checklists for Bartonella, Babesia..."   Langhoff "The Baker's Dozen and the Lunatic Fringe..." 43. Before you got sick, what was your “normal” body temperature? Less than 97 (really low) Between 97 and 98.4 (low) Between 98.4 and 98.8 (average) over 99 (high) I don’t know       44. What is your average body temperature since you’ve been sick? Less than 97 (really low) Between 97 and 98.4 (low) Between 98.4 and 98.8 (average) over 99 (high) I don’t know       45. How many other people in your life also have a lyme/MCIDS diagnosis (not counting people you’ve met because you share this diagnosis)? None 1-3 4-6 7-10 more than 10      46. What one or two pieces of essential advice do you wish you'd heard sooner and can offer to newer patients?     47. What is your age? Under 20 20-29 30-39 40-49 50-59 60-69 over 70       48. What is your sex? Female Male Transgendered       49. Where do you live? State/Province: Country:   50. In case I do a revised version of this, what questions do you wish I had asked?