Hi, I went to the doctor for a physical complaining of symptoms of fatigue, mood swings, body aches, etc. She tested me for lyme disease and said I tested positive, but wanted to wait another month to re-test. I started researching online and called with questions, she said she had done a Western Blot, but still wanted to wait a month to re-test.
Unfortunately, my insurance cancelled due to a billing error and now I don't have insurance and need to get re-tested. What should I do? If I tested positive with the first test, is that indicative of having lyme disease? Can I wait another month for my insurance to re-activate? Should I be alarmed?
Posted by WildCondor (Member # 434) on :
Lyme disease is a clinical diagnosis (based on symptoms). Negative lab tests mean nothing with Lyme Disease, although a positive Lyme test can help you get your insurance company to pay for long term treatment. Any doctor who tells you that you don't have Lyme Disease because your ELISA, Western Blot etc. was negative is an idiot and you need to get out of there. You absolutely MUST be checked for tick borne co-infections through a Lyme literate lab. You must be checked for Babesia microti,Ehrlichia, both HGE, and HME, Bartonella henselae, and Lyme disease.
If you tested positive you have Lyme. If this is a recent infection, waiting a month could result in a more complicated illness and many more months of illness and treatment before recovery.
Lyme does not go away on its own. You tested positive and need to be on antibiotics now.
Posted by laura j (Member # 14257) on :
No need to retest. You have Lyme and NEED to start treatment RIGHT AWAY! You need a Lyme Literate MD (LLMD) b/c a regular doctor won't prescribe abx for long enough. Don't wait!!!
Posted by bettyg (Member # 6147) on :
you've got lyme disease! you need to get on antibiotics right away for a LONG ENOUGH period to stop this vs. it becoming chronic like rest of us!
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Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Aniek: If you tested positive you have Lyme.
Why waste your money on more testing? Mabye your dr knows she can't treat you, so she's looking for a negative test.
Just a thought.
YOu don't want the second test to come up falsely negative....then any future ins co will try to deny treatment.
Posted by disturbedme (Member # 12346) on :
No need to re-test, no way!!! Positive IS positive!
You definitely need to find a lyme literate doctor. Go to "Seeking a Doctor" section to find one in your area. Any other doctor will, for the most part, not treat correctly and not for a long enough time. Plus, most of them don't know about co-infections or never treat them.
Posted by Lymetoo (Member # 743) on :
up
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by Lymetoo: Mabye your dr knows she can't treat you, so she's looking for a negative test.
Exactly.
Your doctor's hoping she'll eventually come up with a negative test, so she can claim the original one was a "false positive."
They LOVE that!! Don't ask me why!
Find an LLMD and get started in treatment ASAP.
Ignore any suggestions from her that false positives are 'common.' Ain't so. 'Specially in New York!! Post in "Seeking a Doctor."
Good luck!!
Michelle
Posted by lnc2000 (Member # 18440) on :
you must ask doctor for antibiotics right away, at least 200mg Doxy twice a day or you'll become like us if you wait longer, it happened to me 9 months ago (the dumb Dr. put me on 2 wks of 100mg then stop, which made it worse), and now i feel so miserable with chronic Lyme.
Posted by Leelee (Member # 19112) on :
I do not think you need a re-test. Did your doctor give you the specifics of your Western Blot such as which bands were reactive? I would be curious to know.
I think you would be better served by an LLMD. Most do not take insurance and the waiting list can be long, so you may want to consider making an appointment with one as soon as possible.
Posted by Lymetoo (Member # 743) on :
INC2000 .. vwarrick never came back, so will likely not see this. I guess we "lost" another one to a stupid doctor!