I was told in Dec my Lyme test results were negative. My doctors have diagnosed me with cfs and fibro and think MS is a possibility. It never occured to me to ask to see the results of the Lyme test since I was told it was negative.
I have all the symptoms, have had them for almost four years, and I am getting worse and worse. My doctors have prescribed me adderall for fatigue but it does nothing. Next week I switch to Provigil which hopefully will work better.
Beyond the fatigue they are not trying to treat any other symptom, and I'm slowly going broke from the constant co-pays. I have follow up visit after follow visit in which they tell me nothing and do nothing for me.
So I asked for the results of my Lyme test. It's clear I'm going to have to pursue answers on my own. They'll let me linger for years while they keep billing the insurance company and telling me "I don't know."
The test result print out just says:
LYME AB ELISA: VALUE FLAG <0.91
TEST INTERPRETATION: NEGATIVE
Shouldn't there be a number there? If it's <0.91 what is it?
They won't order further testing because of they feel they have enough proof that it's not Lyme. Isn't this test one that is not the most reliable? Is there somewhere I can order another test on my own?
I can't keep getting worse and worse. I need answers.
Hi Desperate...yes you had the least reliable test there is. It would be best if you get a test kid ordered from Igenex Lab in Palo Alto. And from what I understand the western blot is the one you want. Atleast it wil show bands (if they are going to show).
My test NEVER came out positive through Igenex...Or CDC standards. I had bands show. IF I had known then what I know now...you have to fight tooth and nail even if you have ONE band showing. Or even none as long as you have the symptoms...
I heard a interview by Dr. Stephen Harris. The son of the Doctor at Igenex. Bacteria (s) don't like oxygen so it is very hard to get a positibe on a blood test. It is best to have a DNA test.
I would suggest posting for a Lyme Lterate Medical Doctor and get to them.
Hi desperate1,
The test you had was probably the Elisa. It's a screening test, and yes they say for lyme not reliable. If your elisa came back positive a western blot would have been run. Similar to HIV testing.
I'm like you I had my primary doc. run a lyme test. It was the elisa and came back neg. but I did get a titer #.23
You can get a test done on your own through IgeneX. A MD or DO has to sign the form for you. Not a PA or assistant.
I just went through this and here is what I did.
IgeneX is on the internet. Easy to find.
Call the 1-800 number. They will send you the test kit with instructions and order form for the doc. to sign. I just ordered the $245 test. It's and IFA and 2 western blots. (IGG & IGM).
I took the order form with me to the Infectious Disease doc I had an appointment with and he agreed to sign the form. Try to be tactful because they may think you are wasting your money or something. I told him for my "peace of mind" I would like to see the results. I paid for everything myself. After he signed the form I took it to a private lab and paid $35 to have the blood drawn. Tubes and everything are sent in kit from IgeneX. They even send a pre-paid Fed-Ex retrun envelope.
The test results are sent to the doctor who ordered it, not to you. You can then get copies from the doctor. Everything is really pretty easy. Your regular family doctor can order it for you. If you tread lightly and pay for everything yourself some doc. should at least sign the form for you. Good Luck. mc
