I was wondering if anyone found out they had Lyme disease instead of RA. The first doctor I went to ask me about Lyme disease and I didn't remember until I got home that a few months ago I had found a tic in my bra. Plus, I didn't tell him that I was having chills really bad at night. I just wasn't thinking that day. Anyway, I'm being treated for Ra now. I feel like I should talk to my RA doctor about checking in the lyme thing. My systems came on suddenly, Isn't RA something that come on slowly or what?
Hi and welcome to the boards!
I think it is certainly worth getting the blood tests to rule out Lyme Disease. If you found the tick a few months ago, sounds like enough time has gone by for it to show up in your bloodwork if it is Lyme.
Give your doctor a call and ask if they can set it up for you to go in and get a blood test. You should be able to do that without waiting for an appointment.RA can come on suddenly, it did for me and a few others on the board. I do agree with Hill though, that you should mention the tick to your RD.Hi, thanks for replying, I have an appointment in the morning so I'm going to bring this up to her and see if we might check it out. The thing is I do have some of the other systems. You know it funny even I notice I had a speech thing happen a few weeks ago three different times I had said words like backwards. I don't know what to think.
Let us know how it turns out, ok? Won't it be great if you don't have RA?
If you decide to get tested for Lyme, the preferred lab is Igenex.
If you click on my osteo page below, you will find Lyme symptoms on the menu on the left.
RonI'll let you know who it goes, I just hope she'll look into this. I would love for it not to be RA. I think my other doctor just blew me off because I call after I left his office saying I remembered the tic and having bad chills. I even called my husband before I called the doctor back to confrom that I did find a tic in my bra a few month back. My husband said he did remember that I told him that.Hillhoney, You are sadly misinformed if you think a Neg Blood test for Lyme rules out Lyme. Igenix is a good start for a Western Blot and Lyme panel6t5~ how do they rule it out, if not blood tests?That would be great if you have Lyme's because Lyme's is curable.
Gimpy~ that is so annoying. Just kinda leaves you hanging.
Van~ this is probably a ridiculous Q because you'd have mentioned it by now, but you didn't have that target like rash, did you? Is that always a symptom of Lyme's?
The Igenex test uses bands looking for Lyme DNA, if I have it right. If you have something like 3 of 5 - you have it. It's controversial. However, I'd take that in a heartbeat over the CDC's Western Blot and Elisa which they admit is off something like 35-50% of the time.
Here's a link to the Newsweek article.
Also, these guidelines they are talking about led to the AG of Conn. filing the restraint of trade of RICO or whatever lawsuit against the MD's who developed the guidelines and who didn't admit they had financial ties to Pharma and conflicts of interest. Hmmmm.
And if you Google "Great Lyme Debate" you hit an ABC show I think is still viewable.
I was soooo hoping I had Lyme - from what I've read something like 40% of those infected DO NOT get the bullseye.
All our tests are garbage! (getting off soapbox now)
Lymenet.org is a great place for info. Many people do not get the rash. It's a clinical diagnosis. Very tricky. If you are lucky enough to get a positive test good for you. Just remember that RA and Epstein Barr can hinder results on the test[QUOTE=Gimpy-a-gogo] That would be great if you have Lyme's because
Forgive me for hijacking this thread, but I have to know...Gimpy, Pip, et al., what does it mean if the neurologist's test is positive for RF but the RD says his tests are more difinitive and his tests say my disease is undifferentiated? Does that mean I have RA or not? I'm being treated like I do. I'm so confused.
Van, listen to the good advice here and get tested for Lyme ASAP. I'm hoping your don't have RA. Good luck and please let us know what you learn.
I thought the 'undifferentiated" meant syymptoms of other AI diseases? Am I wrong? Like of Lupus and SD and oh, a lot of them. Anybody know?
PipHey everyone, here's the thing with me. I'm a dog groomer and I did find a tick in my bra, maybe 6 to 8 months ago, might have been even longer. Now before that I had a grooming and boarding kennel in a small town outside of Houston. I sold that like six years ago and didn't work again until last year. So, I know for sure I picked off a tick or two back then. But I never thought to get checked for lyme disease. If I have lyme, I hope it's from this last tick instead of 5 years or 6 years ago. I just hope my doctor doesn't think I'm being stuped.
I'm to the point now of not caring if they think I'm stupid, crazy or emotional or whatever label they want to use to blame me instead of doing their jobs - which, in theory, is making me well. There's a big difference between RA and Lyme in that Lyme is definitely an infection and definitely curable that even they do not dispute. Some people are lucky as heck to only need a short course of antibiotics and be OK with Lyme. Others, left alone, need a ton of antibiotics and a Lyme Literate MD who knows how to combat this disease. But the end result is they can be cured.
It bothers the heck out of me that rheumies, knowing this, don't move heavan and earth to verify the exact cause of the disease. With so many people exposed to Lyme, you would think they would like some portion of their patients healing instead of an ever widening spiral of chronic pain, misery, loss of function and quality of life. Yet they are content to just 'treat the symptoms' instead of help the few they could definitely help. We can't seem to win with anybody thinking outside the box.
Because of Lyme (I tested negative by IgeneX) and reactive arthritis (tested negative to syphilis) being infection based, I figured what ever I had had to be infection. I'm glad I did - and damn glad I chose the antibiotics. And one day I'm going to go back to every last one of those MD's and dance in front of them. Of course, they'll just think I really am crazy - but at least I'm a crazy person that can hip hop and funk it up when needed.
Michelle - have you Googled for UCTD and read up on some of the info on it? Maybe you can figure out where they're coming from that way.
My stepmother had lime, it was undx until she woke up with paralysis on one side of her face and thought she had a stroke. Her symptoms started about 6 months earlier with severe migraines. She had no bulls eye marking, and was on antibiotics for about 4-5 months. This was about 2 ˝ years ago, currently her face is basically back to normal, she has a lot of joint stiffness and fatigue- it has started to calm down (shes doing acupuncture). I know that a lime titer was one of the first set of blood tests I had prior to my dx. I think that if you were to have lime it would be from the tick you had on you a few months ago …but everyone presents a little differently and it wouldn’t hurt to go get your self checked out.
My first thing to happen was on mothers day my jaw got all messed up, that took about a week to go away. Then a big dog pulled me really hard at work when I was putting him back in his cage messed up both shoulders. I went to the doctor they took exrays found nothing wrong. Next, a few weeks later my hand went it's all been work realited. Every time It starts by causing some stress on some area. I was just playing like jogging next to my husband at the Texans game,well my foot swelled up, couldn't hardly walk the next day. I have chills all the time, a weird thing happen these last few weeks. I didn't know until I read this today, about speech. I had been saying word backwards, not like fumbling my words but very clear, Yesterday my husband said ,(what did you say) I said a word backward. It was like the 3rd time I did that.
Oh Pip, are you saying you have lymes?
It's me again I hope I not boring you all to death. It's just I don't want this RA! I had the test for it by my Internal medicine doctor, it came back neg. He said that didn't mean that I don't have it. They were going by exrays. Then reffered me to a RA doctor. But you know when I first started going to the doctors, They couldn't explane why my pain moved. I would be red like on one knockle and then it would move to the next then the next. Also on my foot it started on the top of my foot then worked up to the front of my ankle. They couldn't explain that. Does anyone know anything about this weird stuff?
No on the lymes - but I chose AP - antibiotic therapy because my stuff all started with an infected tooth and how could 2 types of RA be infection and the rest not? It just didn't make sense to me. I still don't get the 'your body mysteriously starts attacking itself' definition to auto-immune. So, how come it worked fine up until that tooth? NOW it's all of a sudden going haywire? See what I mean? So, I lucked out in that I had a really high RF that the rheumy said was 'unusual' for RA (it's not I learned here on AI) and combined with that tooth, lead me to search for 'high RF' and 'infection' and 'bacteria' and I found the www.Roadback.org which is dedicated to treating autoimmune diseases with low dose antibiotics. I thought they were a cult - but one I decided to join.
Since then, I've read a ton of research and I've learned that there is a growing body of evidence that ALL these diseases are intracellular microrganisms dedicated to ruining my life. There are people using antibiotics for ALS, MS, Lupus, RA, basically any chronic dehabilitating disease.
So, the 10 docs that I blew thru to get my Minocin mean nothing to me. Isn't that awful? I even had to fly out of state to get an AP top dog to help me. The relief I felt when he said "I think we can help" cannot be expressed in words. It was like Christmas and my birthday and the 4th of July all rolled into one.
So, I started AP and hit the AP lotto in that I had almost no herxing (most get worse before they get better) and just slowly got better and better. From where I sit (on my patio in LA with my new life starting around me) if I even thought I had Lyme, or any other AI disease, and there was a tiny little chance I could be 'cured' and be done with this garbage I'd move heaven and earth to verify I didn't have any of the diseases that mimic RA. It's a lot easier to believe in the possibility of infection and cure when it's something your doc believes in too.
Since I am essesntially incurable (Palindromic RA) I just focus on the fact that there is no disease out there that somebody didn't just walk away from and heal from in the past.
Why not me? Why not all of us?
OMG - another Palindromic.
Check out www.palindromic.org.
Is that you? It's me!
PipI had a blood test today, she's going to test me for lyme disease. She didn't sound to concerned until I said something about for the last two weeks I have said some words backwards and I didn't even know that was a system until yesterday. She said it would take about a week to get the test back.
I did a biofeedback session a couple of weeks ago. I know I have RA, but I don't feel like I am making enough progress and I am on a very aggressive treatment plan. Anyway, I have felt for some time now that there is something more going on and wanted to see if anything showed up in the biofeedback. My number one thing that showed up was the RA, and number two was Lyme disease! I am going to get checked at my next appointment.
I am kind of hoping for a positive result because it gives me hope of getting rid of this terrible fatigue I have had for more than a year. I had two incidents within one month in my garden shortly after we moved into a new house about 1 1/2 years ago. The first time I had swelling and itching between my first two fingers that was spreading to my whole hand. I was treated with a steroid shot, prednisone and antibiotics. A couple of weeks later I had a similar situation but this time it started with fatigue in both wrists and by the next day both hands were swollen and itching. Again, I was treated with a steriod shot and topical cream. It didn't seem I had been bitten, I just assumed that I had gotten into poison ivy of some type. It was about that time that the fatigue started and progressively got worse. It was also about that time that the RA symptoms were starting to appear.
I've always thought the fatigue was part of the RA, but I have been on aggressive treatment since last April when I was diagnosed and I am still overwhelmingly tired. It could be that I haven't found the right combo of meds yet, but it could be Lyme's and that would be a relief of sorts.
Another mom at school thought she had MS. She had a brain lesion and many symptoms. When she had her spinal tap she found out it was Lyme's...antibiotics and now she's fine.
I can't stress the IgeneX test enough because almost every article written on Lyme mentions in passing the CDC tests are 'inaccurate'. Me...I'd want to be as sure as possible with what I'm dealing with.
My sister has Lyme and she had the bullseye presentation to boot. She has been suffering for two years now. Unfortunity, she lives in a State that just doesn't seem to care. She tested negative on all the tests but due to all her symptoms, it is definitely Lyme. The doctor's just say this is a lifelong disease. Here is a listing of symptoms and she has at least 80% of them:
I'm sorry she lives in a State that doesn't treat Lyme aggressively but it's hard to help her when she won't listen. I don't even like to think about it.
Has she seen an LLMD? Didn't somebody post Lyme.net (or whatever, I can never remember). Even MI has one of the top MD's - maybe there's somebody in her state.
It's not the state - it's the MD.
PipREMEMBER. AS BAD AS THE CDC STANDARDS ARE. THEY DO SAY IT'S A CLINICAL DIAGNOSIS, SO EVEN IF YOU HAD A NEG BLOOD TEST YOU CAN AND SHOULD BE TREATED ON THE SYMPTOMSVankama- Sure sounds like Lyme to me. Go see a LLMD ASAP. I don't care what the test says. If it's Quest Lab you are wasting your money ( LLMD - Lyme Literate Dr. )
She has "supposedly" seen a LLMD but he seems to treat totally differently than we do in Lyme Country. It's too late for her to get the all important immediate antibiotic treatment and being untreated now for so long what can I do.
I even called the Department of Health of her state to find a Lyme doctor or to see if they even track it. They don't track Lyme so therefore there was no list or anything.
I also have a friend whose sister has had Lyme for over 20 years, well before it had a name. She is permanently disabled from Lyme including serious heart damage.
Oh, this is just awful! Every time I read newspapers about the two types of MD's and their camps - it makes me cry. There is a girl on the RB who had Lyme and an RF of 7400+. She's down to 200+ now. I know there is a point of no return - but there is also stopping more pain and more damage! Anyway, this womon on the RB fired 2 of the top AP docs until she found a doc that will work with her and help her get her life back. We have bozo's too. Your sister needs to find another AP/LLMD that will work with her and if that means going out of state - then it means 'road trip'. Have you thought of lurking on the Lyme boards to see if you can find a name of a good doc and taking her there yourself? Wait, you're in Asia right now! Do you have any other options?
VanKama - did you see the link to www.palindromic.org. You wanted to know about the odd symptoms you have. I think you might be Palindromic. Check them out.
You remembered. Yep, we're living in South Korea. She has seen my totally remission of RA with AP but she is unwilling or just plan gave up to fight the fight for her Lyme. She really seems to try ANY doctor even though she heard my problems with rheumys.
Until she is ready to listen and not give up there is not much I can do. But I feel her untreated Lyme will be giving her long-term illnesses.
I even told her about Daryl Hall of Hall and Oates getting Lyme and it took a year of IVs and he says he is still in recovery.
Did you see the Amy Tan info? Freakin' amazing. Unless we get a famous person - nobody listens. When we do get a famous person, they get bought. Sigh.
I am suspecting the same for my sis-in-law. She started AP for RA right away because of me - but I'm pretty darn sure she didn't take probiotics and I think she went over to the 'other side'. I understand her need to not have pain - they have 5 kids - but...I'm sitting down with my bro over the Holidays and there's going to be a throw down. I can take her - she has RA (LOL) and him too!
I did not know anything about Amy Tan.
I'm learning that all I can do is support her in her decision. I'm sooooo glad AP has put my RA into remission. I can't imagine living in a foreign country and having health issues. It's bad enough just trying to figure out how to cook dinner with the ingredients available to me.
I visiting the States for the first time in over 5 months. Gee, it will be good NOT being stared at every time I leave home. I'm sure a lot of changed since we left so it will be interesting to see if we suffer from reverse culture shock!
Becky in Suwon, South Korea