When the doctor had me tested for Lyme, I read and researched and it seemed Lyme could be the explanation for so many unexplained symptoms I've had over the years, from mental fog and paranoia to weakness and difficulty in walking, heart palpitations and facial twitching--the list goes on and on.
Today, however, the test came back negative. I'm diagnosed with arthritis and that's that.
Would it be worth my while to seek further testing and another opinion?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by nwisser: Would it be worth my while to seek further testing and another opinion?
YES!!!!
Don't stop until you have a Western Blot from Igenex Lab in CA.
Definitely. My ELISA test (which is usually the only one a doctor orders) came back negative.
My western blot came back very much positive.
Posted by Geneal (Member # 10375) on :
You can test negative and still have Lyme.
Lyme disease is a clinical diagnosis.
Please post in Seeking Doctors with your state and city.
You really need to find a Lyme Literate Medical Doctor.
Hang in there and welcome to the board.
Hugs,
Geneal
Posted by nwisser (Member # 15682) on :
Thank you, everyone who answered.
I have been given a list of LLMDs nearby. I'm worried about whether insurance will cover, but I'll call the doctor who's closest first and see how he handles it.
I appreciate the hope and encouragement!
Posted by Lymetoo (Member # 743) on :
Most GOOD LLMD's dont' take insurance. It ties their hands.
Posted by bettyg (Member # 6147) on :
remember, you are INVESTING IN YOUR FUTURE ... so you can work again and just have QUALITY OF LIFE! Posted by AliG (Member # 9734) on :
Did you get a copy of your "negative" test?
Were there ANY positive bands?
Posted by anthropisces (Member # 15672) on :
I just got my negative Lyme results back from my DO also. His office thinks it is a done deal. It is...for them.
I am the poster child for Lyme symptoms I think. When the neurologist, and the neurosurgeon, and the ENT specialist and a couple of GPs throw their hands up and say "looks like you are fine...maybe you are stressed", it is time to move on.
Stressed; A year ago I was free diving out in the Atlantic, alone, diving 70 feet at times on a breathold. Now I don't dare swim 10 laps in our little community pool (I will swim 8 tonight though, just to give em hell).Yeah...I'm stressed. I'm looking for an LLMD now and when I find one I will be so happy. I only hope it happens before too long. I am the symptom king with a negative lyme test from my GP.
Posted by sixgoofykids (Member # 11141) on :
Did you get a copy of your results? My doctor told me mine were negative, but fortunately I had a copy of them that showed otherwise. The fact was, she didn't know how to read a Western Blot.
Posted by nwisser (Member # 15682) on :
Thanks. I'll have to request a copy of the results. I don't understand why we aren't given the results of tests! They did a full round blood test, a Lyme test, and x-rays, but all I got were two notes, one saying the full blood test was normal and I have arthritis (not even what kind), the other with only the words "No Lyme" scrawled across it. Do I request the results from the doctor's office or from the outpatient facility where the x-rays and blood were taken?
Posted by Lymetoo (Member # 743) on :
I think you need to request it from the dr's office. It's your right, so fight for it if you have to!
Most GP's don't use a quality lab like Igenex, so it's more likely not to show the Lyme.
And most drs don't use the Western Blot. They do the terribly flawed ELISA.
So... when you get the test, let us know what it says.
If it's an ELISA, it won't "say" much of anything.
Posted by nwisser (Member # 15682) on :
The blood test results say that I had an "ANA test", for which the result just says negative, and a "Lyme total ABA screen" for which the result says .59 (negative).
Posted by The Future MD Lymee (Member # 15830) on :
The ANA test is to rule out Lupus.
If you feel 'at home' with the lyme symptoms,
I take a doctor running an ANA test as a further
confirmation... That's my personal opinion.
As for the lyme blood work it's almost completely useless in my opinion.
There are people with severe lyme who come out with no bands, even in the Igenex test.
Yet, after receiving treatment and retesting is done, bands come up positive once the immune system can begin to function again.
...See a different doctor and NEVER give up!!
You know your body BEST!!! NOT THE DOCTOR!!
Listen to your gut. That is where most of your conscious is anyway..
Hope you're on the upside today!!!
With much sincerity, Jen Posted by Lymetoo (Member # 743) on :
Sounds like an ELISA test. Even Johns Hopkins recognizes the unreliability of this test. Hope you're still searching or have a plan to get tested thru Igenex Lab.
Posted by nwisser (Member # 15682) on :
Thanks. I've been dragging my feet a little on this (maybe reluctant to make a move that says, Yes, I think I have Lyme--because it seems like a long and difficult road).
However I realize that going untreated is even a longer and more difficult road.
It just feels like a big step to take in my mind.
In the meantime, however, I have located an LLMD from lists sent by people on this forum, and he is so close that there's no excuse for not seeing him!
AND--I have started on part of the Buhner protocol, now just waiting for the arrival of the rest of the herbs which I've ordered on line.
I've been a non-degreed botanist from childhood when I wandered around with my parents' wildflower book, identifying every plant I came across, so I already admired S.H. Buhner and his books.
His name on the book about Healing Lyme was enough to get me to buy it and it didn't take long for me to decide to try his suggestions.
Then lo and behold a recovered "Lymie" was selling some of the hard-to-find herbs on Ebay, so it seemed pre-ordained!
But I know I also need to see the LLMD.
Have I said that I really appreciate the help and encouragement I've found here?
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