posted
..good cholesterol, BP is great, no issues with immune system...confused. My symptoms say lyme, had one test come back pos but the next 2 came back neg...Memory is horrid, trouble sleeping, can hardly use my left hand at all (neurologist says RSD), night sweats, issues having sex (embarrassing), flu-like symptoms, mood changes, and a tremor that wont go away. All but the issues with my left hand have been on going for almost 2 years.
Posts: 98 | From Maytown PA | Registered: Apr 2011
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Jon...you need to have an LLMD.
If you are positive, you are positive. Doesn't matter what the next 2 tests say. You have symptoms of lyme and co-infections (Babesia and / or Bartonella...there are no sweats with lyme.)
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Ok. What do I ask my PCP for when I request information? I guess I mean like what tests were done, what the results were (bands and what not) and if she does not believe it is lyme, if she will share said info with a LLMD...
Posts: 98 | From Maytown PA | Registered: Apr 2011
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I would get copies of the tests to go over where you have access to understanding what the different bands and other results mean for different tests.
I'm not sure how much it matters if the PCP believes in lyme or not. If you want experienced help diagnosing and treating this, you will want to get to a doctor who specializes in treating lyme.
Perhaps a few doctors are mean and will not share test result copies with patients, but most will. Regardless, if you go to a LLMD, they will be able to request copies of the tests from your PCP (you'll have to sign a form), and the PCP will have to give them to your LLMD.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Thank you! I have contacted a lyme doc here in pa...am hoping to hear something soon. Will give my PCP a ring in the morning as they are closed now lol....Am so very, very glad I discovered this site....
Posts: 98 | From Maytown PA | Registered: Apr 2011
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these were done 2/7/2010 ? Never told about these.
2/16/2011
Lyme Antibodies IgG WB neg following bands (all) non-reactive 18, 23, 28, 30, 39, 41, 45, 58, 66, 93. All have KD IGG next to them....
Lyme Antibodies IgM WB neg following bands no-reactive... 23, 39. However, 41 KD IGM was reactive.
PCP ordered both test done again 4/4/2011 and they were neg across the board. Nothing reactive or positive.
She now is having me checked for HIV, Lymphoma, and seeing a rheumatologist. I am totally stumped and confuesd now. Have not heard from the LLMD to set up my first appointment yet so no idea what to do. Posts: 98 | From Maytown PA | Registered: Apr 2011
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posted
Nothing wrong with continuing to test for other things if your primary wants to do that...but I would definitely move forward with the LLMD Apt also. Regular labs don't have sensitive enough tests, LLMD's use Igenex..specializes in lyme.
Even then it's a clinical diagnosis, my igenex results were weak. Based on clinical symptoms my LLMD started treating right away. You could try antibiotics to see how you do, if you herx then there's your answer. There's many people on here who haven't tested positive.
If you've had lyme for a while without being diagnosed your body isn't making the antibodies that would show up in your blood. I would def go forward with the LLMD...otherwise you'll always be wondering if it's lyme.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
None of your tests are positive that you've posted but it doesn't matter. With your symptom pattern, and a K41 alone, it would increase suspicion of at least investigating Lyme Disease as a possible contender.
It sounds like Lyme Disease to me, plus probably another infection or two, but between now and seeing the LLMD, feel free to test for whatever else your doctor would like -- just be careful about what medicines you try if they diagnose you with something requiring "Prednisone, or other steroids or immuno-suppressants."
Other than that, test away. Who is the doctor you're considering seeing? Just say their first initial of their last name -- don't say the name, it's not permitted on this website.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I was told the ELISA was positive but the doc at the time put in his notes it was a false positive yet still had me do the Doxy. Never told me they tested for lyme the year before or that it was a false positive. Took my new PCP to give me said information. She has been wonderful but is going my test results for information. Has no problem with me seeing the LLMD but requests he share any information.
Posts: 98 | From Maytown PA | Registered: Apr 2011
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posted
Um, Doc D. in York pa...saw positive things about him in the looking for doc section and he is far and away closer than any other to me....
Posts: 98 | From Maytown PA | Registered: Apr 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
All my blood tests and immune tests also come back normal. Yet, I have lyme. It is possible.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
I am now going for a CT scan of my abdomen for Lymphoma on Monday and also getting a chest x-ray as well. The x-ray supposedly because I have not had one in a while but I suspect it is also to check for lymphoma. I am hoping you all have a excellent Easter!
Posts: 98 | From Maytown PA | Registered: Apr 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
It would be nice if you could get ahold of your ELISA results. Their are lots of false negatives with that test, but a positive is a positive.
I don't think it's a bad idea to rule out other things. That way you can feel confident that you are treating the right thing.
I hope that you get some answers soon Jon.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Whew, all my tests were negative with all labs but Igenex and the only one that was positive was for Lyme, but I do have both co-infections as well. I had about 3 negatives with other labs. Use Igenex please!
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
Well, another thing down. Not lymphoma so I guess if the docs rule out enough stuff sooner or latter there is going to be an answer...
Posts: 98 | From Maytown PA | Registered: Apr 2011
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