My GP ordered Lyme IGG, IGM - EIA blood work 3 weeks back and it came negative <0.8 not detected. I am going to see a lyme specialist soon since I have similar symptoms, but no rash, no recall of tick bite. I am curious what are the tests that he is going to do special to diagnose other than the regular blood work? Where the blood work being sent to? How they know how long the person is being with lyme?
Also I want to find how they confirm that one is lyme when you have symptoms similar to other illness. desparately waiting for some one to answer my questions... thank you,
Posted by minimonkey (Member # 8693) on :
I highly suggest that you do a search on this topic on the board -- use the search function that is located right under the "post a reply" thing at the top of this page. There are a ton of lengthy posts with all kinds of information on this.
In short, the diagnosis needs to be made clinically--- based on your symptoms rather than blood tests. The best testing (as I understand it) for Lyme is available through Igenex labs in Palo Alto, CA -- they can screen for Lyme and co-infections too. There are a couple of other labs that are pretty good, too.
In any case, a negative test result does not, in itself, mean you don't have Lyme.
I know how scary it is to be where you are -- I just finally got the dx of Lyme yesterday, after years of searching!
Posted by minimonkey (Member # 8693) on :
What are your symptoms? I think some of the knowedgable folks on this board can at least help to point you the right direction...
GPs don't generally know much about Lyme -- sounds like yours is better than most. It probably makes sense to call your GP and see where your tests were sent... most tests are not sensitive enough to pick up late lyme, and sometimes the body stops producing enough antibodies to register positive on even the most sensitive tests.
BTW -- a lot of folks with lyme don't remember a bite or a rash....
Posted by martha2006 (Member # 8767) on :
thank you for the reply. I have muscle aches (auto movements, muscle pulling pain), Chest rib pain, headaches, spine tightness. My b12 is low and all other blood work normal. My doctor sent the blood tests accurate diagnostic labs, NJ. He ordered Lyme IGG, IGM - EIA tests and all came negative. I am taking B12 shots and oral and feeling little better, not sure if b2 or lyme related. I am scared and I am looking at many different possibilities/illnesses.
can you share your symptoms and how long it took to dx with lyme for you? I requested doctors list in Edison, Nj area, did not get any referals yet. please let me know...
Posted by pomegranite (Member # 3339) on :
FYI---I am in my third year of treatment which started on the basis of clinical diagnosis and a reverse western blot from Igenix (not a genrally accepted test) which showed that I had DNA of bb in my body. My Western blots IGG and IGM even by igenix were negative. It wasn't almost three years into treatment that I started having postive IGM blots by Igenix. Now 3 years and 4 mos into the process I not only have positive IGM from Igenix, I also have CDC positive IGM from Stonybrook!!!!
You can't go by one test early on. Many people, now myself included start showing positive blots (which is a better test than the elisa) after they've already been in treatment for a while.
Pomegranite
Posted by vitch (Member # 8094) on :
Lyme tests & labs are worthless. I suspect you're going to have to travel to find a LLMD. Did you say you have an appt with a LLMD? Where did you get his/her name?
Posted by SForsgren (Member # 7686) on :
Read the "Testing" link on my site below.
Posted by humanbeing (Member # 8572) on :
I had two false negatives from my GP...then when I started getting wise to the lyme crazyness, I got a test at stonybrook...came back cdc positive IgM.
Don't panic...(like I did), it doesn't help. Just calmly get yourself to a dr. who knows what to do. You can always call columbia...Dr. Fallon's clinic offers a lyme evaluation service.
You will get to the bottom. But you must be patient and calm...everything I did in my prelyme days...multitasking, going really fast, being a go getter...fixing stuff...that is over.
Lyme will force you to learn patience, persistance, and drive you to be fiercly and maternally on your own side...(even if this is not your normal personality)
PM me if you are feeling overwhelmed...I am new at this stuff too. Posted by martha2006 (Member # 8767) on :
I am going to take appt, someone sent me the doctors list. Looks like one of them is in my insurance. I will give a try with Lyme as well, I am sure I don't have lyme, but we never know...
please share your symtomps and experience. I never heard some one died because of lyme or anyone having lyme in my life. when I surf the net this disease matched with my symtomps.
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