One of the test for me when they were trying to figure out what was causing the pain was a Lyme test which was negative. So yep my primary dic tested me.

In the initial blood work - 9 tubes - that my Rheum. ordered, Lymes was one of the tests done. I was negative.

A friend of mine who is an EMT still insists that I have Lyme even after my RA diagnosis. I was tested for Lyme in the beginning also, but from what I understand the first basic test isn't conclusive. There are a battery of tests that need to be performed to actually find Lyme.

Being I live in the boonies and spent most of my life in the woods it does make some sense that I might have it also. But since my RA diagnosis and treatment I am responding to the biologics, so I just kind of forgot about the Lyme.

I was tested for Lyme right away too. And something else that sounded funny, "Whipples", something like that. Anyway I have a good friend who has Lyme and is on disability due to it. She has been all over the country for treatment, and much of her issues due to Lyme disease, are similar to what I go through.

My initial test for Lyme was positive but the confirmatory test was negative. I do not remember ever being bit by a tick although my dogs occasionally get ticks on them.

Yes my first lymes was positive and then they did another one and the western blot which was negative. I never had or saw a tick and yes they r small. No bullseye rash so I never thought mine was lyme even though I live in the country and spent time in the woods. Good luck

thanks for the opinions/perspectives all.

jen, i think the reason my friend is pushing me to get tested for lyme is that my symptoms went from really bad to kind of eh and back and forth. of course ra can flare and subside regularly, but when you take into account the fact that mtx, enbrel, and humira all had no effect on me... i wouldn't say my pain went down to nothing, but i'm sure i went from regularly being a solid 7 to 2-4 depending on the day. i live on long island where we have lots of woods and deer ticks and crap like that. i don't hike or anything ridiculous like that, but it's seriously easy to get bit by a tick out here.

i think part of me is still hoping there's an easy, non-ra related answer to what's been going on in my life. especially since i haven't had any luck with anything they've tried in the last year.

Great post, Jen.

There seems to be a cottage industry in the alternative community involved with treating "chronic Lyme", a diagnosis that may or may not be valid. If you should happen to test positive, Steph, look with care at treatment options.

yes , i have no recollection of deer ticks on me, but I am currently being treated for lyme and my body is reacting to the treatment. I was diagnosed with RA by two Rheumy's and other doctors agreed. Both rheumy recommended MTX and Remicade as soon as possible but I declined. Current MD. put me on antibiotic therapy for RA. After 2 1/2 years and only a little progress my symptoms seemed to change with anxiety and sleeplessness again (worsening and no pednisone anymore). He tried this homeopathic lyme remedy and I seem to be getting better - keeping fingers crossed. I found this doctor thru web called roadback.org. My pain and suffering began about 10 years ago and I also was in remission thru diet six years ago, for couple years. Than I think my symptoms came back as my diet got worse. Now I hardly watch what I eat at all. Still take 800 mg ibuprofen twice a day, and lorazapam at night with one vicadin to try sleeping, which does not always work. Well God Bless all, keep your hope up and laugh as much as possible

i wasn't familiar with the idea of chronic lyme, but after consulting dr. google and reading a bit about post treatment lyme disease, it sounds confusing.

i'm just going to see about the test and go from there. like jen in connecticut, i live in an area simply crawling (lol) with deer ticks and although i don't remember specifically being bitten by a tick recently, it's definitely possible. i've had ticks pulled off me when i was younger that i didn't know i'd been bitten by.

john, you say you're being treated for lyme - did you test positive on both elisa and western blot? i'm guessing since you had been being treated for ra, you didn't have a rash or any other telltale symptom of lyme.

I'm not real knowledgeable about Lyme but there was a huge increase in ticks this year along with other things. We found a couple in our home. Never in the years before had a problem.
My husband & I were both bit by something with a circle type bite. Not sure what is was but thought it was strange to go all these years with no problems & in one year we find the little buggers.
Simply don't know enough about this but should learn.
Yes we live near parks & enough woods.
Suburbs but country like also.

Jen that is to upsetting to ponder on to long. Although I've heard the same about other conditions. Fibro was a big one with the medical community not able to agree.
At one point my doctor explained some doctors referred to Fibro as a "waste basket disease" or it was all in the patients head. After all the minds a powerful thing & don't you know there's millions of people wanting to "make" theirselves sick with pain.
Learned a lot about the medical community over the past 10 years.
Enough to scare me into realizing a couple things.
Better be your own advocate & willing to get more then one opinion.
Worth looking into Steph. Better then wondering.
Thanks for sharing.
Sammy

jen, i just don't trust any teeny beasties. i hate them all. and i didn't realize deer ticks were that small... i've pulled ticks much larger than that off my dog and kind of guessed that was what carried lyme. there's no freaking way i would even notice being bitten by a deer tick if they're that small.

going to the rheumy in the AM, demanding a lyme test in addition to whateverthehellelse she's testing, and hoping that eventually something helps ;) thanks for all the info everyone, especially jen - you're always a wealth of knowledge :)

Yes the deer ticks are so very small. I know with me they checked for lymes cuz I live in the country and am outside alot. My first was positive then western blot was negative. So negative and again that was one disease they want to rule out.

i have no rash such as bulls eye but I did get systemic poison oak or something that kept popping up in different area of my body, and itched very much (12 years ago). I had one blood test 3 years ago I do not think it was western blot. But since going on homeopathic lymeplex combined with calcium lactate and cataplex f and cataplex c I got real sick first three days than pain in legs/knees and feet improved dramaticly still have alot of shoulder pain though. sleeping is getting better and less anxiety. Perhaps shoulders need physical therapy. Hands are better also, and I know longer fear the pain and inflammation coming back. I pray for you all and wish and hope with all my heart they or you find a way to deal with your woes and ills, especailly RA there has got to be a better way. Again I was misdiagnosed by several doctors with RA and RA like symptoms, it is and has been an incredibly difficult journey. I still use Oil pulling techniques and take 100 mg minocycline Mon., Wed., Fri., Plus motrin as needed (shoulder pain etc.) Vicadin 1 a nite and lorazapam 1 at nite. need to get off narcotics so i can go back to work. God Bless!

I actually did have decent progress with antibiiotic protocol as I was nearly unable to work I would wake up with such terrible pain indescribable pain and hands and feet hurt I could barely walk in mornings. After 6 months I was alot better I stopped prednisone I thought I was on my way to remission from RA. Than two years later the shoulder pain started and sleeplessness and anxiety ontop of or added to leg/knees pain and feet pain and hands, not just mornings, but after drive in car or sitting more than hour, very painful to get up. Most of these symptoms are gone since lyme treatment