Hello, I just stumbled upon this website and found it to be very nice. I was diagnosed with lyme about two years ago by an orthopedist after complaining about knee and ankle pain. He put me on amoxicilin for 30 days and after my symptons persisted I was sent to an infectious disease doctor. He did another test on me and said that I was in a gray area on the test and that I didn't really have lyme. So I went to a doctor who treats arthritis and he said that I had Chronic Lyme, which meant that there was nothing I can do. I'm pretty uneducated about the disease, and I haven't seen a doctor about it for about a year because the last one was very rude to me. I can wakl for about 20-30 minutes before my knees start to hurt and I can't stand anymore. Does anyone have any good info. they can tell me about the disease, or Chronic Lyme, or about this "gray area?" Thanks a bunch/
Mimi
P.S I was also put on doxicilin (something like that) somewhere in between all those doctors and it made me really sick.
[This message has been edited by Dreamgrl202 (edited 16 July 2004).]
Posted by smiles (Member # 5635) on :
Hi, dreamgrl202, Welcome to LymeNet - this is an excellent place to learn more information about lyme disease.
And remember no question is silly - we are all here for support and education!
Take care. Smiles
[This message has been edited by smiles (edited 16 July 2004).]
Posted by Lenny777 (Member # 5452) on :
When you where on the Doxy you got really sick because you where having a Herx(probably) That's when the antibiotics kill off the Lyme and that releases toxins. So it kind of sucks but it's a good thing. Testing is not the way to diagnose lyme you need doctor who is well versed with lyme, it's symptoms and it's treatments. They are called LLMD's Lyme Literate Medical Doctors. If you go to the Seeking a Doctor section someone can help you find one in your area. http://flash.lymenet.org/scripts/forumdisplay.cgi?action=topics&number=2&SUBMIT=Go
There are so many people here who have had negative tests and they have Lyme. So this gray area your Infectious Disease doc is talking about is probably the gray matter on his brain. If you've been infected for very long your immune system is run down and probably can't produce enough antibodies to show up on a test. Find a LLMD and get some help, stick around here, research and learn...oh, ask a bunch of questions.
Posted by danq (Member # 2126) on :
Lenny said it all in a nutshell, perfectly... so I won't add to it, except to reinforce: you need a LLMD, a.s.a.p.
Dan
Posted by TheCrimeOfLyme (Member # 4019) on :
The only gray area that I see, unfortunately but typically, is the lack of understanding of this disease that doctors have ( and don't profess quite well)
1.) There is hope for you. 2.) Lyme =infection. Infection= need abx. 3.) Get a LLMD.
YOu can beat this.
Posted by Dreamgrl202 (Member # 5938) on :
Thanks for your help everyone. I just have one more question..well probably more, but for now just one! Can you have Lyme without such sever symptoms..because I have joint pain, and for a while I had a huge loss of appetite and wouldn't eat (I'm better now) and I'm tired a lot but I don't have any of the severe things I read on the symptoms list..I think the worst thing for me is the joint pain.. I forget I have Lyme if I don't think abouti t, and it seems like a lot of the people here have been affected much worse by it than me. And also..are there better LLMDs in Boston than CT cuz I'm going to college in the fall in Boston..but I'm in CT right now..so should I see about one on Boston?
Mimi
Posted by Lenny777 (Member # 5452) on :
I was the same way. I didn't feel right but I wasn't near as bad as most of the people you hear and read about. So, I really doubted I had Lyme. My main symptoms where very slight funny feelings in my hands, a constant lightheaded feeling, a touch of fatigue and that was pretty much it. Now that I started treatment I get a small herx here and there with aches and chills and more profound fatigue. I've never missed a day of work...wanted to but I was able to tough it out. So, yes you don't have to be one foot in the grave to have it. The fact you got worse on the doxy is a real good sign it's Lyme. I'll leave the Boston part of your question to someone else...I'm just W.T from Texas.
