Seeing my PCP MONDAY, SEPT. 10, 2012... could use some help!

Hi everyone,

I'm new to the forum so forgive me while I give you all some background.

I'm a 50 year old female from Western PA. In 2010, I began working out with a personal trainer, lost 33lbs and felt better than I had since I was a kid. Since then, the last time I remember feeling really well was Aug to mid-Sept. of 2010. By November of that year (2010), when I visited my ob-gyn, I had regained 15lbs and was feeling so muddled and tired and achey that I could barely function. I couldn't get up enough energy to make it to my trainer regularly, was forgetting things, and generally felt crappy. Doctors ordered the usual blood work, including thyroid function, and everything always came back normal.

My PCP also ran some blood work and found elevated ANA, so he sent me to a rheumatologist, suspecting lupus. That Dr. felt I did NOT have lupus, but ran additional blood / urine work and found nothing. My PCP then diagnosed me with fibromyalgia and I was given Celebrex, then Lyrica, both of which I had to stop due to side effects. I've been taking a drug called Savella for about 6 mos. now. It doesn't seem to be helping at all. I've also been to an endocrinologist and have an appt with a new rheumatologist in a couple of weeks. By the way, I have no gained about 60lbs total, although I'm not eating differently than I was before all this hit.

In addition to the usual aches in the typical places for fibromyalgia, I have been experiencing aches in my hands. It began at the base of both thumbs. I noticed some stiffness, and when I pushed hard on the joint closest to my hand, it would be painful. I also noticed that the outsides of both of my feet, from my pinky toes to the next toes over, felt kind of numb, not like they were completely asleep, but just strange enough to make me aware that something was off. Now all these months later, both of my hands ache constantly and now my feet are beginning to ache as well. In addition, I have horrible heartburn (which isn't new to me, but is severe) that erupts when I eat the slightest bit of something... I'm taking a daily prilosec for that, which is making me slightly anemic.
I have swelling behind one knee which results in pain and some difficultly walking after sitting for a long time. One of my doctors thinks that the aching in the hands is from regular old arthritis, but I find it difficult to believe that I would develop arthritis in BOTH hands, exactly the same way at exactly the same time.

I walk my dogs frequently in the woods and in the park, and we have been having a bad tick problem for the last few of years in this area, so I'm wondering if this might not be untreated lyme disease. I don't remember finding a tick on me and did not see the bull's eye rash, but I read that the rash occurs in only about 40% of people who have been bitten. I've been reading the other posts and it seems like my symptoms match up with many of yours. As I said, I have an appt with my PCP on Monday and will try to convince him to check for lyme disease, but I'm seeing differing tests that may show false positives. Which tests are best? Any other typical symptoms you are experiencing? Oh, and I've been diagnosed with sleep apnea and have trouble falling asleep and staying asleep as well and have to take naps daily in order to be able to function on some normal level...

Thanks in advance for all your insights!

Hi Shabbychic!

Thanks for taking the time to answer... you're right of course, I typed false positive when I meant false negative... I did read through the other section and it holds a lot of good information which I hope will convince my doctor to at least do some additional testing. We'll see what happens on Monday. Thanks!

Hi smazur and welcome to the forum. I give you so much credit for taking on the personal trainer and losing the weight. Sometimes lyme can hide in our bodies and a major stressful event or change can bring our symptoms. As you know, most of us here have been through the distressing part of being improperly diagnosed. It is one of the hardest parts of lyme as you can drive yourself crazy second guessing yourself. My advice is to go with your gut feeling. I too was constantly saying how could I have developed all these odd symptoms at one time and have it be all separate things and of course it wasn't.

It is good to try and convince your PCP to do some lyme testing but I would strongly recommend Igenex. They are a lab that specializes in lyme. If you want to start with your local lab, demand that they run a western blot and not just an elisa. While the western blot is not very reliable, it can give you a better picture. Also, make sure you get a copy. I made the mistake of thinking that a negative was a negative while significant banding can appear and give you some info.

It is extremely hard to convince doctors of a lyme possibility. The disease is just so misconstrued it is terrible. But stand your ground. Its your body and you alone will have to fight if in fact it is lyme. Keep us posted.