I didn't call to ask for a copy of my results, but it's negative. I know the whole CDC and igenex ordeal with number of bands present, but is it possible at all to still have it with no bands reactive? would a general physician still treat you even if it is negative based on symptoms or no?
Posted by GretaM (Member # 40917) on :
General physician-not likely unless you have a documented EM, pic of an EM or a tick attached for a long time.
Best bet is to see an LL. Lyme is a clinical diagnosis-too bad most gp's don't realize this.
Also you won't be assessed for coinfections at a GP, or given adequate antibiotic therapy.
If you're lucky you'll get just enough abx to turn the spirochetes into cyst form. That's it. And that's terrible when that happens. (lucky was sarcastic)
Seeking is a good place to post for a LL in your area.
Posted by Lymetoo (Member # 743) on :
You need to have at least ONE band show up. The lab is very important. If you had a test thru Quest or Lab Corp it is less likely to find the Lyme disease.
Posted by Kaseyyy (Member # 43797) on :
So if no bands show up, it is definitely not lyme? Regardless of strains, etc?
Posted by Judie (Member # 38323) on :
It could still be Lyme. The test only tests for a specific strain of Lyme.
There's also borellia miyamotoi and there's no widely available test for that in humans yet.
"Under the new legislation, patients being tested for Lyme disease must be officially informed that a negative test result does not mean they don’t have Lyme disease."
Posted by Lymetoo (Member # 743) on :
But most tests show at least one band if Lyme is present.
But Lyme can shut down the production of antibodies, so it is possible to have Lyme and not have any bands positive.
I know of someone who had no bands positive until they had gone through a lot of treatment.
Also, if this test was done through a lab that does not test or report all the bands, then it is possible one or more of the untested/unreported bands is positive, but that would not show up in the results.
Posted by Lymetoo (Member # 743) on :
True... I'm just being cautious in my responses. I don't want this person barking up the wrong tree.
Posted by desertwind (Member # 25256) on :
Considering a long term chronic case could show no bands. After a few months of treatment bands will start to become positive. That's what happened w/ me.
2004 CDC +++ positive on all igg/igm bands. Stopped treatment too soon, became chronic and tested negative till 2008 when a llmd re-treated me for one month and then bands started lighting up again.
Not uncommon for co-infections to test negative or to have an uncommon co-'infection that your Dr. may not have tested for - such as q-fever.
Posted by Lymetoo (Member # 743) on :
Here is kasey's original post ...
-
"Can anyone give me any suggestions for a lyme doctor in the allentown/palmerton area? I want to call the doctor for a copy of the test results but I am apparently negative.
I've been having stomach problems for months, stiff/sore neck and shoulders and jaw, general fatigue. My vitamin d came back low but a month or more ago, i started feeling lightheaded basically constantly and it seems to increase in severity in periods of times..
Just recently I feel more anxious all the time, tighter chest?, hear heartbeat a lot, hearing seems to be off and sometimes things seem loudish, feel out of it and in a dream a lot which upsets me..
Recently the lightheadedness hit even worse, my joints seem to be sore, it felt weird to walk like my body went super heavy and weak including my head so i went to the er. Felt really off balance, lasted almost a week.
had pink eye like two months ago, and i remember having a sore throat lasted 3 weeks. When i stand from sitting my feet feel heavy, tingly. The lightheadedness and spaced out feeling scares me the most..and i am always SO tired. I really hope this is not "fibro" or "anxiety". Any suggestions?"
Posted by susank (Member # 22150) on :
I will throw in to say have your immunoglobulins tested.
Total Quantitative Serum for Immunoglobulins: G - and subclasses A - and subclasses M
If one has an immune deficiency then one does not make enough antibodies to show up on some antibody tests.
Research: Hypogammaglobulinemia and Common Variable Immune Dysfunction
One can have Lyme and be HypoG/CVID One can have Lyme and no HypoG/CVID One can not have Lyme and be HypoG/CVID
Tired..hope this makes sense.
Treatment for HypoG/CVID is IVIG. Many feel exhausted when not on IVIG and feel better when on it.
Posted by TF (Member # 14183) on :
Kasey, you really, really need a copy of that test result.
If it shows bands at all, there are most likely some positive. Some are surprised that the test even shows "positive" even though the doctor SAYS it is "negative."
One person had that happen, found it out years later, and wanted to know if they could sue the doctor.
This kind of thing happens with lyme. So, you have to get a copy of that test result and keep it in your files.
You also want to see the name of the test. Was it Western Blot, EIA, ELISA, etc.
So, go get the test results.
Posted by Lymetoo (Member # 743) on :
Ditto... and do know that is it your RIGHT to receive a copy of the test.
Posted by Keebler (Member # 12673) on :
- From a year ago (for those just looking at this) . . . still . . . .
Posted a few months later from original post way above.
In trying to answer a question today
in one of Kaseyyy's thread, when I stumbled on this thread (above) it confused me. In case others might be confused, too, in trying to trace posts so as to better answer current questions, detail below changes all above.
So, timeline: a few months later, it becomes very clear with better tests, better lab.