IMPORTANT PROJECT ABOUT LYME DISEASE

Hi, I will be happy to participate:

1. How old are you?
29 years old
2. For how long have you had the Lyme disease?
11 months and 2 weeks
3. How did you find out that you have/had the disease?
Easy, I got sick from someone who had the disease so I personally knew exactly what I caught as I had major symptoms just 3-4 days after meeting this person. It was an entirely different story trying to convince doctors.
4. Do you have any idea how you’ve been affected with the disease?
It is awful and beyond horrible. It torments and tortures you every single day and is very hard to overcome. You goto great lengths to get rid of it only to have the symptoms come back.
5. What where your symptoms in stadium one of the disease (0-6 months)
Insomnia, painful knees, anxiety, muscle spasms, muscles twitching, burning muscle pain, body feeling like it is on fire, brain tingles, blood shot eyes, testicle pain, prostate pain, nausea, red rash on feet, dizziness, confusion, brain fog, cognitive dysfunction, low blood pressure, low body temperature, cold intolerance, hormone imbalance, stiff neck, pain in joints, brain pulses, vibration sensations, eye floaters, weight loss, fatigue, headaches, ice pick headaches, eye ball pain, tendon pain, bone pain.
6. Did you get any problems in this stadium which affected your daily life?
Yes, inability to function like myself. Plus having to spend so much time treating it.
7. Which symptoms did or do you have had in the later stadium of the disease? (starting from 6 months)
I had all symptoms in first 6 months. It got slightly better since but I still have symptoms.
8. Did you get any problems in this stadium which affected your daily life?
9. How has the treatment elapsed (so far)?
I feel better but I am unable to clear the disease out of my body.
10. How quick was the cause of your symptoms known?
I knew right away. It's Lyme disease, convincing the doctors was close to impossible so I had to pay the big bucks and see lyme literate doctors.
11. How bad has the disease affected your social life?
Killed my social life. I have no social life at all now.
12. How bad has the disease affected your work/school performances?
Work has suffered, I have been coming late every day and I am not able to function and do tasks as easily. I have restored most of my functions at work with treatment tjough.
13. Are you happy with the informing you got about the disease? No this disease has been a nightmare. You really don't "get it" unless you get it. I rate it's severity up their with HIV/AIDs for sure, and it does become chronic with extremely complex treatments if you can afford a doctor for it.
14. Do you think that if you had had more information about the disease, you would have found the cause of your symptoms earlier? Not about the information, but about doctors having the information too. Clearly I was more informed than the doctors.
15. Do you think that your country needs to invest more money in informing people about the disease? Yes absolutely. The severity of the disease is enough to completely ruin someone's life.
Yours faithfully,

I'm very sorry, but you didn't read our rules before joining and posting this. You do not have permission to do any surveys on this site. Please contact Admin - there's a link at the top of the page in the same bar as the Log on/off button is located.

I'm locking this thread until I hear that you have received the approval necessary for this.

1. How old are you?
I am 19 years old.
2. For how long have you had the Lyme disease?
I've had the disease for around 3 years.
3. How did you find out that you have/had the disease?
I found out that I had the disease after a few month period of dramatic weight loss and many other symptoms. Eventually, I couldn't work or go to school for long periods of time. After a combination of many symptoms sent me to the hospital, I was tested positive for Lyme disease.
4. Do you have any idea how you’ve been affected with the disease?
I've been affected in many ways since I've gotten the disease. On a daily basis, I have around 30 symptoms that vary in severity. I had to stop playing football along with martial arts and had to stop working. I have been tested for everything else out there that can possibly contribute to my symptoms and even had an ID talk to me about post treatment Lyme disease syndrome.
5. What where your symptoms in stadium one of the disease (0-6 months)
My symptoms were mainly insomnia, extreme fatigue, bad headaches, fluctuating body temperature, stiff joints, and the "brain fog" many people describe.
6. Did you get any problems in this stadium which affected your daily life?
As stated above, I had to stop participating in many activities that I loved and had to stop working. I also had to work with my school to work around the many days of school that I missed.
7. Which symptoms did or do you have had in the later stadium of the disease? (starting from 6 months)
I started to develop more of the neurological symptoms after 6 months of being diagnosed and treated. That includes very shaky hands, body tremors, sharp shooting pains through my body, a tingling sensation in my head and many others.
8. Did you get any problems in this stadium which affected your daily life?
I have become used to many of the symptoms and am in college now, however there are still some days I cant get up out of bed.
9. How has the treatment elapsed (so far)?
I am almost finished with my second round of antibiotics from my physician and feel much better now than how I felt before the medication. However, I still have some of the symptoms and feel that I will get worse (again) after this treatment.
10. How quick was the cause of your symptoms known?
My symptoms came about slow enough not to think that I had Lyme disease until I was tested positive for it in the ELISA test. I blamed my symptoms on my activity level and not on actually being ill.
11. How bad has the disease affected your social life?
It has effected it in a pretty large way. I always feel tired and don't feel like doing much at all. However, I have a great support system in my family and in the friends that I had in high school, They all understand my symptoms.
12. How bad has the disease affected your work/school performances?
Whenever I first got the disease, it affected me my grades in a very poor way. Running on an hour of sleep each night through high school while taking all AP and honors courses is extremely difficult and it showed in my GPA. Now that I am in college, i was able to work with my school and set up plans if I cant make it to class or to reschedule a test if I had no sleep the night before.
13. Are you happy with the informing you got about the disease?
ABSOLUTELY NOT. I have seen countless ID's, physicians, dermatologists and so on and none of them will give me an answer on why I am continuing to have the symptoms that I do. It took me 2 years to realize that I am not the only person who is experiencing these symptoms after I was treated and the time in between was riddled with fear and confusion. Every time that I went to the doctor, I was told that I have some new condition that I need tested for, which always came back negative. One thing that I wish I had done when I got the disease was to talk to someone who also had it just to understand that I am not going completely insane.
14. Do you think that if you had had more information about the disease, you would have found the cause of your symptoms earlier?
Honestly, no. I would like to think so, but all of my symptoms were general symptoms at first that match countless other illnesses and diseases (that is why some people call Lyme disease the great imitator). I do think that if I was told about the possibility that the disease can be chronic that I wouldn't be where I am today with my symptoms.
15. Do you think that your country needs to invest more money in informing people about the disease?
Without a doubt. I have met many people since I got it that had no idea that it existed and what any of the symptoms were, including the bull's eye rash. There is also a need to inform people about how devastating this disease can be, especially in the chronic form. It has dictated almost every part of my life since I got the disease and have talked to countless people who tell me to be grateful that I don' have anything else and that I am dealing with problems that everyone has to deal with. There are two things that people should do at the minimum: watch "under our skin" and listen to the band called typhoon. The lead singer had lyme disease as a kid and he almost died from it. Many of their songs talk about how it was dealing with the disease. They are also a great band!

If you have any other questions, feel free to ask. I am glad that some people are listening to what we have to say.

I don't believe I can participate in this survey, but only because I have no idea when I was infected -I know that by age 9 I had late stage symptoms (like Lyme arthritis), and it wasn't until 40 yrs later that I started effective treatments.

I would however like to thank you for taking the time to contact Admin and getting permission to post. It's greatly appreciated. I hope that you get a lot of information and that you will come back and let us know the results.

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.

8

2.For how long have you had the disease?

over 30 years

3.How did you find out you have/had the disease?

IGeneX Western Blot test

First period of the disease
4.What where your symptoms in stadium one of the disease (0-6 months)

Wandering leg pains.

5.Did you get any problems in this stadium which affected your daily life?

Yes, it was hard to sleep sometimes because the pain in my legs would be so severe. Thankfully, this didn't happen very often...

6.How has your treatment elapsed (so far)?

Was not treated. Relied on heating pad or rubbing my legs to cope with the pain.

Later stadium of the disease
7. Which symptoms did or do you have had in the later stadium of the disease? (starting from months)

Wandering leg pains, fatigue, brain fog, difficulty swallowing, digestive system problems (nausea/vomiting, gut pain, reflux, constipation, diarrhea, numerous food intolerances & allergies, etc.), muscle weakness & soreness, seizure-like episodes, muscle tremors/twitching & jerking, shin splints, back pain, joint pain, eyes sensitive to light, left ear tinnitus and sound sensitivity, vertigo, insomnia, exercise intolerance, poor resistance to infections, etc.

8. Did you get any problems in this stadium which affected your daily life?

Yes. I had to quit my job, and I also know that the disease impacted my ability to study in school. I did have good grades, but I know I would have done better if I was healthy.

The consequences of the disease
9.In what ways did the illness affect your social lifestyle

The disease makes it nearly impossible to plan for social events. And with chemical sensitivities (likely contributed to or caused by the Lyme), I can't be in many public venues or even other people's houses without suffering severely.

10. In what ways did the illness affect your school/work performances

I am unable to work or attend school now. If I was healthy, I would be working.

11. How has your quality of life been since you have had the disease on a scale from 1 to 10?

2

Information about the disease.
12.Had you ever heard of the disease before you were infected?

No.

13. Could you have saved yourself from getting the disease if you had had more information about the disease before?

No, because I was a little kid when infected. Also, I did not get the disease from a tick, I got it from the bite of a red fire ant. I have read that fire ants eat ticks, thus conceivably could have acquired the Borrelia bacteria in their mouth or gut from eating ticks.

14. Has the doctor informed you well about Lyme?

He didn't need to. I did my own research between when he drew the blood to send to IGeneX and when the results came back.

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

Yes! The government currently funds research for many other diseases, but very little on Lyme, and even less on coinfections (which complicate Lyme treatment).