Interview

Hello,

our survey has been updated in a couple of ways.

So now we have to do our survey again.

I hope you still like to participate?

But don't feel any pressure, I understand completly if you don't really feel like it anymore.

It would still mean a lot to us, thank you for your help!

-Fauve


The period before the disease.
1.How was your quality of life before you had the disease on a scale from one to ten? Think about sports, work and social life.
1 2 3 4 5 6 7 8 9 10

2.For how long have you had the disease?
3.How did you find out you have/had the disease?
First period of the disease
4.What where your symptoms in stadium one of the disease (0-6 months)
5.Did you get any problems in this stadium which affected your daily life?
6.How has your treatment elapsed (so far)?
Later stadium of the disease
7. Which symptoms did or do you have had in the later stadium of the disease? (starting from months)
8. Did you get any problems in this stadium which affected your daily life?
The consequences of the disease
9.In what ways did the illness affect your social lifestyle
10. In what ways did the illness affect your school/work performances
11. How has your quality of life been since you have had the disease on a scale from 1 to 10?
1 2 3 4 5 6 7 8 9 10
Information about the disease.
12.Had you ever heard of the disease before you were infected?
13. Could you have saved yourself from getting the disease if you had had more information about the disease before?
14. Has the doctor informed you well about Lyme?
15. Do you think that your country needs to invest more money in informing people about the disease?
Yours faithfully,

The period before the disease.
1.How was your quality of life before you had the disease on a scale from one to ten? Think about sports, work and social life.
10

2.For how long have you had the disease?
15+ yrs

3.How did you find out you have/had the disease?
13 months chronic sinusitis and bronchitis led me to get emergency treatment about 8-9 times—I was given various antibiotics and steroids, which made me worse. I started developing many lyme, babesia and bartonella-specific symptoms. I googled them and lyme kept popping up. I think started seeing an LLMD—she tested me with ELISA, which was negative. She then "provoked" a better immune response by giving me olive leaf extract for a couple months and then I had a "CDC-positive" IGeneX result and positive Fry Lab test for Bartonella. My strongest symptoms are from the Babesia but I don't have a positive test result for Babesia yet.

First period of the disease
4.What where your symptoms in stadium one of the disease (0-6 months)
I suspect that right after I was bitten my first symptom was severe flu for 5 days. Soon thereafter, I developed thyroid problems, extreme fatigue, problems with foot pain, GI problems, cognitive issues and change in personality.

5.Did you get any problems in this stadium which affected your daily life?
Every symptom, every day of my life.

6.How has your treatment elapsed (so far)?
I started with treating high viral levels and GI support, then added Byron White herbals, and I have recently started Rocephin via IV.

Later stadium of the disease
7. Which symptoms did or do you have had in the later stadium of the disease? (starting from months)
I still have all of the same symptoms I started with that are now more severe and now also have more arthritic and muscle pain.

8. Did you get any problems in this stadium which affected your daily life?
The consequences of the disease
All current symptoms affect my daily life.

9.In what ways did the illness affect your social lifestyle
My social life has changed drastically as my personality changed significantly after being infected. Before being infected, I was very social and enjoyed social environments, had many friends and engagements. I now have very Asperger-type personality traits. Also, feeling sick all of the time reduces any desire to interact normally in life.

10. In what ways did the illness affect your school/work performances
Year by year, I have faced more and more problems with working and performance. I finally had to resign a year ago and my doctor has grounded me from working during my treatment.

11. How has your quality of life been since you have had the disease on a scale from 1 to 10?
50% of the time it is a 2; 50% of the time it is a 5

Information about the disease.
12.Had you ever heard of the disease before you were infected?
VERY peripherally—I knew nothing about it other than it came from an infected tick and you could only get it if you lived near Lyme, CT.

13. Could you have saved yourself from getting the disease if you had had more information about the disease before?
I don't remember being bitten but knowing more accurate information about Lyme and co-infections would DEFINITELY have prevented me from going so long without treatment and developing chronic late stage lyme.

14. Has the doctor informed you well about Lyme?
I have a great LLMD. I get a lot of information from her and also from this forum and also from independent research (thank you internet!).

15. Do you think that your country needs to invest more money in informing people about the disease?
ABSOLUTELY.