I haven't been feeling well for 3 1/2 months now. When this all first happened I had extreme fatigue, muscle and joint aches, numbness and tingling, insomnia, loss of appetite. Now all I have is joint ache and a little muscle pain. I have had mri's - ms ruled out, tons of bloodwork - autoimmune ruled out, I had a lyme test done by my dr that came back negative. After talking to people I had one done by a lab in California. That one came back negative by the company that does the test and by CDC guidelines negative but I did have some positive bands on it and 2 IND which mean weak positive. After talking to other people that have chronic lyme they are telling me that the bands that were postive are ones that are specific to lyme disease and I should see a lyme literate dr. My dilema comes with my own dr and 2 others saying I don't have lyme and these people suffering from lyme saying there is a good chance I have lyme. Who do I listen to?? Another problem for me is that there are no lyme literate drs here in Illinois and all the names I was given for drs are out of state and have a waiting list. I am so confused and don't know what to do. Any input would be appreciated.
Thanks
Cheri

It is your right as a patient to get a second opinion...And a third, fourth or fifth if it comes to that. This is your life and your health and the sooner you start treating Lyme the better.

Unfortunately, some doctors are just careless (and clueless!) and all of them are just human like we are. It's up to us to take control to get the answers we seek.

Good luck to you. I will keep you in my prayers. Keep us posted! (((hugs)))

Oh, and I meant to add:

You may want to contact your local hospitals (learning hospitals are great for this & on the cutting edge) or center for disease control. They may have a list of doctors in your state that can evaluate you.

Hi there...I know quite a bit about lyme. It mimic 100's of other diseases. Lyme disease and meno symptoms are somewhat alike in many ways. I am going to PM sending you to lyme information.

Shebee

Cheilou:

I have no advice to you because I know less than nothing about lyme but I will say, keep pushing!!! You know something is not right and you have to be agressive about it.

Hugs to you,
Jeaninne

I was sick for 2 years before being diagnosed with Lyme..I also had the test done at the lab in California and had two positives and 2 IND. I have been on abx for almost 3 years and it hasn't helped me. I still have debilitating fatigue along with other symptoms.

I actually had to go out of state to be treated since no one around here knows anything about Lyme even though I live in an endemic state. I am not really convinced I have Lyme or had it. If you can get the doctor to treat you with antibiotics for three months to see if you have any type of reaction. If you do then the bugs are dying off and you are infected. I know tons about Lyme since I have been dealing with it for over 5 years now. Post if you want any more information.

Kim

I was dx with lyme back in 2007. I used to also moderate a lyme board.

To get the BEST info on line from lyme, go to HEALINGWELL. COM and click on the lyme board.

Thank you all for your help. I really appreciate it.
Thanks
Cheri

Cherilou,
My 18 year old daughter developed lyme-like symptoms the summer before her freshman year in college. She came down with severe arthralgia, muscle aches & fatigue. Her lyme titer was negative and the doctor was leaning toward taking no action. I insisted she be treated with antiobiotic therapy (doxycycline) despite her negative test and her physician agreed to it. Although she feels much better now, she still suffers with some vague joint issues. All her other tests for autoimmune diseases were negative. I felt it was better to be safe than sorry.