Lab results are back. I'm so confused!

Hi guys,

I'm riding this roller coaster again after almost 25 years. I was one of the first cases of Lyme diagnosed in NC. Now I'm having symptoms again (swelling of joints especially my hands, muscle pain, fatigue) and went through testing. At first my doctor said I was positive for Lyme and began treatment with Doxy. After 5 days my symptoms worsened to the point I was having trouble walking. She called an infectious disease specialist who said I am negative for Lyme and is questioning if I ever had it. They pulled me off of the Doxy and have me on prednisone until I can get to a rheumatologist on July 9th. I'm so confused! I just need to know if I spend the money ($495 not covered by ins) to go to a LLMD or do I begin with a rheumatologist. Any help is appreciated!

Here is what was abnormal on my labs:

ANA=positive
Rheumatoid Arthritis Turbid= <7.0
IgMP23=Present
Lyme IgG/IgM AB*=High 1.62 index
Lyme Ab. Interp EIA=positive

Everything else was in the normal range. Infectious disease guy said that because I only had 1 band present that I was negative regardless of the other stuff which I don't know how to read.

Thanks in advanced for any help!

I have to disagree with Tube. Their response is almost identical to what an IDSA doctor would say. I myself, did not present many antibodies until I was treated because my immune system was so beat down I was having trouble making them in general.

Your high titer is quite high - almost 2x the amount of what it needs to be positive. To be evaluated correctly, and thoroughly - it is recommended that you see an LLMD.

Had I listened to the information given to you I probably wouldn't be here today. I am fine and not currently in treatment. Not all LLMDs are created equal. Steroids like prednisone are really bad if you have lyme - many on here can attest to that fyi.

It might be interesting to see what the Rheumatologist says but if I thought I had lyme again or knew someone that had your results I would tell them to run to the LLMD. Perhaps there is one that is more affordable near you? Or if you have PPO they might do partial reimbursement - my insurance did do that.

I might also suggest starting another thread asking something like "How many here positive for ANA and RA testing" I know many on hear have had + test of those but it is better to hear it from them and not me since I did not.

~beth

I would say go with your gut. I knew what the ID doctor was telling me wasn't right. I know my body better then anyone so I went with that.

There is no harm (except maybe financially) in exploring other options. Just be prepared to realize that the mainstream medical world wouldn't recognize lyme, likely -even if you were CDC positive. And that can make deciding a bit more difficult. But with me the more drs I went to, the more adamant I was about what was wrong with me.

We've had so many people come on here, and seen blood results that are CDC positive for both IgG and IgM and drs tell them it isn't real. Western blots are too specific to have 4 unique bands that are cross-reacting with something else. Also band 23kDa is species specific for borrelia.

I would be con erned they want you on prednisone. Wish I had a dollar for everytime they put me on steroids. They did usually work short term but I wonder in hind sight if some of my really bad flares were precipitated by prescribed steroids. Have mot had the energy to put that historical puzzle together. It is hard to makt these decisions sometimes. Im not a doctor but yiur results look very suspicious for lyme but you need a doctir that has experience with dx tx lyme, more and more it seems thag is not an ID. Sorry to here you are dealing with this again. That is a lot of years, I wonder do you think you have possibly been reinfected ? That is a long time between flare ups but I have learned to keep an open mind when it comes to these nasty bugs. I wish you grace I making your decision.