(sorry if this is tl;dr)
I haven't posted here much, but of all the places on the internet I know this is probably the best place to go to for this. So, here is my story.
I just recently became a caregiver for a young woman who has suffered from Lyme Disease most of her life. For a long time she thought she just had Chronic Fatigue Syndrome, which is bad enough on its own, having no energy to do anything. But with the lyme disease it just make things really suck.
On her bad days she can't even get out of bed, and even on her good days she still has trouble getting around. She has a cane, and a walker to walk with, and on bad days she has a wheelchair for someone to push her around in.
We were having a discussion this morning about how hard it is to get a diagnosis for many diseases including Lyme disease because even if you do have it you can get a negative response from the test to detect it. We both wish that there were better tests out there because most people probably have Lyme disease and don't even know they have it. And once the symptoms get bad enough that people actually go to the doctor for it its too late and has ravaged your system.
My roommate (who i do caregiving for) just had a doctors appointment today, and because her results came back negative they can't give her the medicine she needs to help beat his thing so she can go back into remission. And even if someone were to go to the doctor and get a diagnosis of Lyme disease they give you enough antibiotics for 3 weeks and say it's all cured. Which isn't true in most cases.
Another thing I learned today during our chat was that you can get Lyme disease not only from ticks but from horse flies. Nasty right?!
I really want to do this for my roommate and I hope you all can help and figure out how we can raise awareness for Lyme disease and get a better way to test for Lyme disease.
If anyone has any ideas at all please, lets get this thing rolling!
Thank you all for reading.
In all seriousness I wish someone would read this and reply. Lyme disease is a definite thing that sucks in this world. Little is known about it. And I want to help the world.
I have a friend (acquaintance) who also has lyme. It's horrendous. But I don't really have any ideas for you on the raising awareness thing. Sorry
I was diagnosed with chronic Lyme disease when I was 13 years old, and it turns out I got it when I was seven. I've been in treatment for three years and am proud to say that I am getting better. Not everybody can say the same. I am so grateful to have been diagnosed, and it's painful for me to see people who are seriously sick but aren't getting a proper diagnosis or treatment. Especially because I can see that they're hurting but they won't listen to me when I suggest Lyme disease. It sucks! We definitely need more awareness--especially toward prevention and being aware of what is dangerous (like walking into a pile of leaves). My mom just got a few schools in the area to put a pamphlet into the report cards of all the students talking about how to prevent Lyme and what to do when you get a tick.
It really is a huge problem and unfortunately it's growing. If anyone comes up with a really good idea, I'd love to help.