Lyme Disease

[Kristi1357]

Anyone have an experience with Lyme disease?

My Mom was diagnosed with it June. She did her round of drugs and felt much better - suppossedly "cured." Then about two months ago, she started feeling achy & tired all the time - her legs esp. really ache all the time now. She has been back to her primary doctor about three times and he keeps telling her that it's stress, arthritis, whatever. She has always been healthy before this.

She is a lab technician. She drew her own blood and ran her own tests. Her ANA was off. I know that indicates something is wrong. She went back to her doc. She had to tell him what tests to order. He did run them himself - same results. ANA was off. He sent her to an Infectious Disease specialist. They want her to see a rhuematologist first for more tests. The first appt. she can get is Dec. 26th. Frankly, I think she can't wait that long. Now she has come down with severe pelvic pain. She has an appt. this morning with her OB-GYN. This new problem is probably not related, but who knows!

What really makes me nervous is that my Mom is always go-go-going. Cleans her house immaculately, helps take care of my niece, etc., as well as working full time. She told me yesterday she was doing Christmas shopping online (she absolutely hates the computer) because she didn't think she could get around well enough this year to do her shopping! This is SO incredibly not like her. And she's only 51.

I am sorry this is so long, but I thought maybe someone here had experience with this and may have some thoughts about what might be going on. You always hear terrible stories about how doctors missed something and there were awful consequences. Since we have the same primary doctor, I am even considering making myself an appt. for my migraines and then talking to him about her. I really think he doesn't know what's wrong, and doesn't know what to do with her. I also think he doesn't know the full extent of just how bad she is doing right now.

Thanks!
Kristi

 

[dumboiu]

I actually do have a lot of experience with Lyme Disease. It sounds as if your mother needs another round (or more) of antibiotics. There is a website you may want to check into. They have a message board which is comprised of some very experienced people. www.lymenet.org

Your Mom may need to find a LLMD (Lyme Literate MD) to treat her. There is so much conflicting research as to how and how long to treat someone. Also, she may want to have a western blot done at Igenex Labs (California). www.igenex.com (I think) or MD Labs (New Jersey).

Feel free to PM me if you would like.

 

[Tiggeroo]

I can't see where your mom is from but in my experience location makes a difference. Here in SJ most physicians have dealt with alot of lymes and it doesn't matter where you go. Even still, with persistant cases it's best to get to a lyme center. My dd had a pretty bad case of lymes and after the first round of treatment felt fine. But I know others who have needed repeated rounds, iv therapy. Good luck.

 

[Kristi1357]

We are in southern NH. My Mom's was the first Lyme case reported this year in the state.

I just spoke to her and she did have the western blot test done in June. It was positive for Lyme. I should have known that she would have had that done since she is a lab tech., duh!

She had done one round of antibiotics and finished at the end of June. She has had no other treatment since then. With both of us doing research on the internet, we really think her symptoms are that of Lyme Arthritis. I guess we just need to find a doctor that will take this situation alot more seriously!

Dumboiu, I PMed you!

Kristi