View Full Version : Hi there, quick question...
07-06-2009, 06:41 AM
Hi everyone, I found this site a few months back and have posted a couple times. My name is Leanne and have been living with severe arthritis among many other things with a positive ANA (1st 1:320, 2nd 1:40). I have an appointment with a new Rheumy in August (3rd!!!). My sister in law was just diagnosed with Lyme Disease so my mom had been looking up the symptoms and what not. A lot of my symptoms could possibly match them (they also match SLE) so who knows. Question is are the connected in any way? Does anyone know what tests are done for Lyme disease? I read that Lyme disease may interfere with the ANA test so am just wondering if anyone knows anything about it. Thanks in advance! Hope you are all doing well!!
07-06-2009, 07:17 AM
Hi LeAnne! Well with lupus it can mask a lot of other diseases. But to let you know the Rheumy will actually check lyme's titers to see if you have ever been exposed to the disease or have a current infection. These are pretty straightforward labs. I really don't know the answer to the ANA being inaccurate because of Lyme's.
Good luck at your appointment and keep us updated!
07-06-2009, 07:36 AM
Im sorry I dont have any answers for you. I dont know anything about Lyme disease :no:. But I hope you get answers soon. I hope you have a good day. Hugs.
07-06-2009, 09:11 AM
Well, unfortunately, I have both lupus and lyme so can probably give you some information. lol Yes, both have some very similar symptoms so it's difficult to determine what's going on at first. Both can cause fatigue, join pain, brain fog, organ damage...
The 2 are not connected - lyme is a bacterial/parasite infection and lupus is autoimmune but both attack the body causing similar symptoms. The fact that I have both is, my doctor believes, because the stress on my body from fighting the lyme caused the lupus to become active (but it can't do this unless you are already genetically inclined to have lupus).
If you test positive for lyme, that's actually not a bad thing because if you catch it early enough, it's usually treated with several weeks of antibiotics (my son had it last year but we caught it early and he's had no problems since). It's only when it gets to the final stage/phase that it's hard to get rid of, which is unfortunately what happened with me.
Recently, my doctor started looking at other symptoms I was having that aren't typical lyme symptoms and I haven't been responding as well to the antibiotics as she had hoped (been on antibiotics for 2 1/2 years for the lyme). I found out 2 years ago that I have Lupus Anticoagulant Disorder when I got a blood clot from IV antibiotics so she had done other Lupus testing at that time which came back negative. Since the non-lyme symptoms were lupus-like (skin sores, sun sensitivity, enlarged spleen, kidney pain, numbness/tingling, muscle spasms) she re-ran tests.
I would suggest having the lyme tests done because if it is that, you want to know as soon as possible. I've heard of people having problems with false negative tests and that one test is supposed to be the most accurate - I think it's called "Ingenex" or something similar to that. There's a "western blot" test that is run for lyme.
Also, request your doctor to test you for tick "co-infections." Some ticks can carry other diseases in addition to lyme - Bartonella, Erlichia and Babiosis (probably not spelled correctly!). If you test positive for any of them, you know you've most likely been infected with lyme as well. (I haveBabiosis as well). Also those co-infections have different treatments from lyme so you need to know so your doctor will know what medications you need.
Don't mean to overload you with information but want to make sure you find out what's going on. If you can get in to see an infectious disease specialist before August, I would suggest that since the quicker you treat lyme, the better. They can run the lyme tests and may have more knowledge about lyme than the rheumy since they probably deal with it more often. I don't know the answer to your question about how lyme affects the ANA reading.
Best of luck and keep us posted!
07-06-2009, 05:00 PM
wow, ang, thanks....
i learned a lot from you post about lyme's.
07-06-2009, 06:02 PM
wow, ang, thanks....
i learned a lot from you post about lyme's.
I did too!!!!!!!!!! I was also tested for Lyme's Disease when I first started to get sick. They ruled it out very quickly and so we moved on to the next phase of goop!!!!! Good luck and keep us posted on what you find out.......... :grouphug:
07-06-2009, 07:56 PM
lol - I wish I didn't know so much info about ticks. However, I'm glad to share info whenever possible though to hopefully help others get diagnosed before it gets to the later stages! I will say I'm am proud that I know I have helped at least 5 people figure out they had lyme and they were treated early enough to have no residual problems! I try to remind myself of that on days when I'm feeling like you know what and thinking "why me?????" ;)
07-06-2009, 08:06 PM
Yeah I have 2 dogs and I go everywhere they go and they both have lyme, so I made them test me twice (1 year apart) as I could have gotten it after first test. My smallest 2 year old dog was tested last June and negative and tested in February positive. There are different types of test they can run, one is blood one is urine. Have them rule that out first as it can be treated and you can be symptom free although you always have it in your system it may never get triggered. Neither of my dogs are symptomatic. My friends kid got it last year and she thought I had it too due to same symptoms. Her son got antibiotics and he's doing very well now. :01::01:
07-07-2009, 08:39 AM
Thank you all so much! I can remember around age 12 having swollen joints and stiffness along with swollen lymph nodes (had one removed behind my left ear that year). I am just so tired of being tired and in pain every day of my life. It is really dragging me down. I want some answers. I need to have something done. I can not deal with this much more. Sorry to be such a debbie downer I am just frustrated. Then Jansen Pharmaceutical approved a new pain med which is non opiate but works like one and the DEA put it in a Schedule II! Because I am on Suboxone my Dr. can not prescribe me another Schedule II drug. I am so pissed because I thought I finally had found something that I could take along with my Sub. and get pain relief. I am currently taking around 600mg. of Ultram and 2400mg. of ibuprofen each day. With very little relief. Along with 10mg. Ambien, 99mg. of potasium, magnesium and glucosimine. My liver thus far is still working fine but damn with all that how much longer will it be? The new med. is called Nucynta if anyone is interested. Sorry for the rant, I'll let y'all know if I find anything else out. Thanks again!!
07-07-2009, 02:41 PM
You can rant all you want!!!!!! It is very hard to function when the pain is just too much. I have also been on Ultram for the last few years and it stopped working on me just about four months ago. I had to ask the doctor to please help me with the pain because I was just having such a hard time during the day. She gave me Darvocet. It really helps with the pain but because it is strong it makes me really sleepy; therefore, I shy away from using it during the day. I am interested in that new medication. I am always looking for new meds to help wit the pain that will allow me to continue to function during the day. Being on methotrexate the doctor is always worried about my liver and like you, I have not had any problems. I also wonder tif that will ever change or if my body will continue to be trooper through all of this......I have faith that my body will hold out as long as it needs to :angelic: You just hang in there and I really hope you are able to get some relief soon. I am sending you gentle hugs and thoughts of a pain free evening :hug:
07-08-2009, 07:08 AM
Thank you. Yeah that new medication sounds really promising, if you end up trying it let me know how it works. I am getting an info. packet around about it to send to my Dr. so he will know more about it and hopefully approve me for it. The medication is called Tapentadol: brand name Nucynta. Here is a link about it if your interested: http://www.nucynta.com/nucynta/
Good luck to you! Thanks again I really appreciate all of you!