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Positive ANA with Lyme?
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Positive ANA with Lyme?

I have been experiencing extreme fatigue, muscle twitches all over my body, hyper active knee reflexes, and head/neck/back aches.

My doctor did some basic bloodwork that was all within normal limits except for a Positive ANA 1:320 Speckled.  Now he is sending me to a rheumatology specialist as this is indicative of an autoimmune disease.  I have been reading the symptoms of Lupus and I know the fatique and positive ANA fit, but not anything else.  Maybe joint pain?  Really, I just ache all over. I was thinking maybe MS or even Lyme disease, but what I read says that neither are indicated by positive ANA.  I am going crazy trying to figure this all out as I wait to see the specialist.  Can a positive ANA indicate Lyme?  Any thoughts?
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Welcome.  The symptoms you have are symptoms of lyme but lyme mimicks many other conditions/diseases.  From what I have read a positive ANA is not indicative of lyme but I would ask to be tested for lyme anyway if it were me.  

The ANA is a non-specific test.  It does not necessarily mean you have a disease. But it does mean that further testing needs to be done according to the neurologist I saw.  He also said that many people have positive ANA titers and have nothing wrong with them.
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Many of us go through a number of MD's offices before getting a diagnosis of either Lyme or a coinfection or something else entirely.

Lyme is a tough one to diagnose, because the tests are not very accurate in some ways, and many MDs have such a restrictive view of what is needed to make a Lyme diagnosis that many of us would never have been diagnosed at all.

Rheumatologists in particular have a reputation for not 'believing' in Lyme disease except as a short illness preceded by specific symptoms such as a tick bite, a circular rash, and inflamed knees, all easily treatable with a few weeks' antibiotics.  You may get lucky and find a rheumy who is more broadminded, but keep in the back of your mind that you may, if none of the other diagnoses pan out, need to look further into Lyme.

Most MDs use Lyme lab tests by the standard 'big labs' like Quest and LabCorp, which are fine organizations, but they report on fewer points (called 'bands') on the tests which would indicate Lyme.  MDs who specialize in Lyme (sometimes casually called LLMDs, or Lyme Literate MDs) often prefer a lab called Igenex, which is held in some contempt by nonLLMDs as being overkill or something.  I don't really understand the basis of the beef.  

Therefore you can be tested for Lyme by a nonLLMD and be told you don't have it, but in fact you may, because it is a diagnosis made using tests in conjunction with symptoms, and if the tests are unclear and the understanding of symptoms skewed, the diagnosis may be faulty.  There is huge controversy in the medical field on this point, with reputations and pride and careers at stake, and the patients are caught in the middle.

After you run down all the other possibilities, and even get Lyme-tested by your rheumy, if you are still coming up without results or just don't feel like you've explored everything you should, then my own next step would be (and was) to find an LLMD and be tested and examined from that point of view.

Some here would also say that they were prescribed steroids, either oral or otherwise, and it had a very bad effect on them because they turned out to have Lyme.  Steroids suppress the immune system, and someone trying to fight an infectious disease (which Lyme is), suppressing the immune system would not be not a good thing.  

I don't know anything about ANA titers, but wanted to put in a few words for your consideration as you go forward.  **I'm not medically trained, so these comments are made generally and as a result of my own experiences and those of others and should not be relied upon as medical advice by anyone.**  

That said, best wishes, and let us know how it goes.
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I've never had positive ANA, nor do I know how to judge the values.

I have read plenty of Lyme patient testimonies that did state a positive ANA.  But no, it is neither diagnostic nor typical for Lyme.  It's also not a very specific test.  

What I would do is see the rheumy and they should have more specific tests.  If those come back negative, keep Lyme in consideration.  You can have negative Lyme tests and still have Lyme.

As noted above, lots of us go through a lot of tests/specialists before getting a dx of Lyme, because Lyme mimics other conditions and can cause some weird test results.  In my case, I had an elevated SED rate and an abnormal brain MRI.  So while the SED rate indicated possible inflammatory disease and the MRI possible MS, the more specific tests came back negative.  This caused more time and frustration before my Lyme dx.  My Lyme blood screens were always negative, I don't recall a tick bite, no bull's eye rash.  

It's stressful to go through so many tests and work-ups, but in many cases it's necessary.  But please do keep Lyme in your list.  Many docs will discard the notion after a negative blood test, but lots of patients learn the hard way how lousy the tests are!

I 2nd the warning about steroids!  I was give oral steroids while undiagnosed.  I paid for one week of relief with a huge negative impact on my health.  I would not suggest resorting to them until you have a firm dx for a condition they are known to help.

Take care.
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While were on his topic of the ANA and Lyme...I was wondering if anyone has heard of Lupus or another autoimmune disease causing many of your lyme bands to be positive??
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Avatar_f_tn
I haven't heard anything regarding lupus and lyme bands.
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My ANA was negative and I had similar symptoms.  I haven't read anything about ANA making lyme WB bands positive.  Like others have stated, it doesn't rule Lyme out but it doesn't point to it either.  We have been through plenty of vague explanations for our symptoms too, so you are not alone.
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I have seen and spoke to people who come up lupus positive bafore and during treatment.  The one I spoke to was cured of lymes after 3 months of antibiotics and the lupus test came up negative later on after treatment.  So are they linked or is our lymed out body so stressed that all that other stuff surfaces in the meantime?
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Avatar_f_tn
Good question....your last sentence.
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I am not sure if they are related, however I have a positive ANA and positive lyme...I think they are not related though.  Also high sed rate...wish I knew if it were all connected....makes you wonder.
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