What is Lyme Disease
Lyme disease or Lyme borreliosis is the most common vector-borne disease in the Northern Hemisphere. Named after the town of Lyme, Connecticut, it is now one of the fastest growing...
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I would love to ask some questions and share a little about me. I have a great primary who did blood work. The lymes came back negative. So RA is the winner that fits the symptoms. The rhuemy's say I do not have RA. My symptoms started about 2 years ago. Went away for 2 years and now they are back. My knee swells, I have had problems this time round with muscels hurting and twitching. My hands, arms, and shoulders hurt. They even shake at the worse times. I am not sure if I have lymes. I do work in a place where there are loads of ticks. Finding them on me is normal. I would like to say the correct thing or go to the correct doctor to prove I have it or get it off the list of things and move on. I am bored, I can't do things I want to do, I am tired and achy all the time. If I try to work out there is a penalty of pain at that moment or later when I least expect it. Thanks!!!
Posted on 07/05/09, 02:07 pm |
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You say you've been pulling ticks off of you all the time -- so it's possible you have Lyme or a Lyme-like illness. If you've been bit, it's possible. You could probably even see an Infectious Disease doctor in this case. 
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The lyme test is not reliable. I had 2 negative tests and 6 months of symptoms before mine became positive. Diagnosis comes for assessment of the the patient complaints. Your symptoms sound a lot like lyme. Try to find a Lyme literate doctor(LLMD) to get you through this. Is your primary trained in lyme disease? No offense to your doc but s/he may not fully understand this disease.
Don't give up until you get a diagnosis and treatment plan, if you can find the right doc, you'll get you your life back. Good luck
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Thanks
I am keeping notes at home. I have an infectious disease doctor who I won't meet until Aug. The blood work was done. I would love to know the results. I hope they call me or send me for more tests.
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Hi there,
If your rheumatologist says it's not RA, I'd tend to accept that. That's like a dog saying "nope, that's not bacon!" They KNOW :-), My rheumatologist also ruled out RA on me, but I had a much different presentation that you. From reading some of your other other posts, it really does sound like you have a nerve problem. The leg in particular sounds like sciatica. Did any of your docs ever confirm/deny it was a muscle problem vs. a nerve problem? Did they ever drain your knee of fluid when it was swollen? You could have sciatica and Lyme, or something else or course. If you don't mind me asking, about how old are you? What kind of work do you do? Are you currently taking any medications/supplements?
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I am 38.
I took celebrex for a while. Then pred for two weeks,back to celebrex, then pred. I do have an appoinment with a neurologist and then a infectious disease doctor in a couple of weeks. Sciatic nerve was glanced at but there are other places that are sensative. When I walk and my hands swing, my shoulders get tight and then my hands swells and shakes. So the thought of the nerves is in my mind. The arms and hands are very new and very concerning. I work with kids inside and outside.
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OH
My knee was drained and that and the blood work said RA. Not very high numbers.
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Sorry, I'm confused...your rheumy does or doesn't think it's RA? If the blood test was for rheumatoid factor that's one of those tests that if it's positive it doesn't necessarily mean you have RA, and vice versa. We Lymies are all too familiar with this kind of test :-(
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The test for ra said I had it by one point according to the rater or whatever it is called. The rhuemy's felt the number wasn't high enough and I did not have the usual symptoms of RA. My joints are not swollen regularly. By the time I get into see the rheumy the swelling has gone. So I don't have it. My primary strongly feels I do. I am trying to find a middle ground and not the middle of the doctors. I hate hurting all the time. One spot stops hurting but there is always another to remind me something it wrong. Lymes is a strong maybe. I really want to know what the new blood works says. If it says negative then what is my next step? If the nuerologist says nope ..then what? So I appriciate everyones thoughts because I am stumped and looking to what to do next.
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Make your next (ASAP) step to see a Lyme literate MD! The best way to find one is to check out:
www.lymediseaseassociation.org I don't know where you live but its is worth any travel to see someone who REALLY knows Lyme. The above website will help you. You can also call any Lyme chapter and they can direct you to food docs
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I am in total agreement with mystayinst. Even infectious disease docs have differing opininions and labs regarding lyme. My son tested negative over a span of 9 years (about 4 blood tests) by GP and infectious disease before I finally went to a Lyme Literate ILADS Doc. Unfortunately, he is in such a late stage that prognosis is not great and it will be years of expensive treatment not covered by insurance, of course. Check out the website she recommended to find a doc or google, "International Lyme Association of Infectious Disease" ILAD. Good luck and don't waste any time.
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