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Anyone here been misdiagnosed?

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Lyme Disease
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Posted 7/14/2012 7:37 AM (GMT 0)
In 2009 my doctor said I had Lyme disease. Said he was going to send me to a infectious disease doctor- never did. Instead he sent me to a neurologist. She leaned more toward vitamin D deficiency and possibly fibromyalgia instead of lyme disease. So I went to another doctor and got tested for Lyme and it was negative. I don't know what to think now. From the beginning I doubted the Lyme diagnosis. When I read the symptoms of Lyme it just didn't quit match my symptoms. No rash, no flu like symptoms, no swelling, no joint pain, no meningitis, no paralysis, no weak limbs, and no impaired muscle movement. I did suffer severe neck pain, twitching muscles and pinched nerve pain but could it have been associated with vitamin D definciency or fibro instead? Has anyone here been misdiagnosed?
Posted 7/14/2012 12:27 PM (GMT 0)
Hi Pattycakes, unless you present with a bullseye or meningitis, I believe most people with lyme are initially if not continually misdiagnosed. I cannot count the amount of time my husband and I were misdiagnosed. It causes me so much angst when I speak to someone with symptoms getting sicker and sicker and being told by doctors that they have this or that because their lyme test was negative. There really are not many diseases out there where a negative test can be so totally wrong.

As you know neck pain is a common lyme symptom. It was one of my first back in 2005 when I came home from vacation and couldn't more my neck I figured I just slept different on a hotel bed/pillow. Vitamin D deficiency is also common with lyme but I believe very very common in the general public as well.

Do you know why your dr. said you had lyme? Did he run a lyme test and if so, immediately get a copy. There may be indications on that test, although negative, that say you do have lyme.
Posted 7/14/2012 3:53 PM (GMT 0)
The doctor that said I had lyme never showed me any test results. When I switced doctors I requested my records but was told they couldn't be found. I seriously think this doctor lied. And he NEVER informed me that my vitamin d was deficient when two other doctors did.
Posted 7/14/2012 4:01 PM (GMT 0)
When i got my first ELISA test for lyme, i was told over the phone it was negative. When i asked for a copy of the labs, the test showed it as EQUIVOCAL which then the docs changed their tune. On retesting, the ELISA came back positive a few weeks later.

I also had IgeneX testing done which was more accurate with the Western Blot test.

Glad you switched doctors!

If you have symptoms of lyme then i would still continue to research it and find out what's going on because your doctors may not take you seriously but you should take every symptom seriously and with this disease, you often have to be your own advocate.

Wishing you well on your journey!
Posted 7/14/2012 4:17 PM (GMT 0)
Pattycakes,

There are really very few "typical" cases of Lyme. Not all Lyme sufferers get all the symptoms on the list, or even in the described order. Some symptoms come and go, and some only appear once treatment starts. Funny disease.

They best thing to do is to get to a Lyme Literate Doctor to be clinically diagnosed, not relying on the inaccurate tests.
Posted 7/14/2012 4:21 PM (GMT 0)
My husband went to 12 dr's all over the state before he got a correct Lyme diagnosis. It is so frustrating! Because we "lymies" look pretty healthy, & Lyme tests are so unreliable, not many dr.s take us seriously. You must find a Lyme-literate md or N.P. You may have to drive quite a ways, but  with the right provider, you will get well!
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